Journey In Faith

A reflective few days

2011-11-06T21:11:00.000-05:00

I have been waiting to post on here about how it is to be 1 year post op. I wasn't sure how I was going to start this post because there are so many things that go through my mind and heart. Some things bring laughter and others many tears. I realized that there are so many things I never really realized a year ago that I look back on now and stand in amazement at. So so many God things that have become apparent and have changed who we are as individuals and as a family. Life looks different through the eyes of someone who has been to the depths and what someone does there can change your life. What I mean by that and what I realize is that we are very different in our approach to life and faith and life. You see in our family there is no separating the two. We don't do our thing everyday separate from God. Now we don't live perfectly in this, but we see things with a kingdom purpose. For everything under heaven happens for a purpose, and God has ordained it all.
One year ago Kasi was struggling to survive. When talking to her today she remembers going to her dark happy place away from everything else that was going on. Her body was fighting but Kasi was at peace. Ex. 14:14 Be still and I will fight for you. Of course she was at peace because everything in us wants to fix, but God says just trust me that is all I ask.
There are many emotions that go along with that feeling of letting go. I had to let go 15 years ago and it has been a process of letting go ever since. We do what we can, but I have come to know that our children all of them are only lent to us to guide in the knowledge of our Lord. Kasi has her own relationship with Him in which she gains her strength. So, as we move together through the challenges of this world we rest in the fact that God is with us in the middle of all places. He never leaves us! His Holy Spirit guides, comforts, protects, sustains, and brings forth all Truth to give all that we need. In the middle we have found to be praising God, and isn't that what God asks of us? I am pretty sure Paul talks about praising God in the middle of suffering! Not because of suffering but because that is what God is the closest to us. We have felt the hand of God we have seen His glory, and have felt His joy as he used us in the middle. Our attitudes were never of why, what or how, but of where, when, and who. We wanted to be where He wanted us to be, when He wanted us to be there, and minister to whomever He wanted us to. Once our minds and hearts acknowledged the fact that God calls us to all places in our lives we could live in the peace of God being in control and letting go. Praise be to Him!!
Our story is not over, nor is anyone of ours. We have a purpose until either Jesus comes back or we are taken to Him. Faith and life do not disconnect, but are always together as long as Jesus lives in you and is Lord of your life. Only at that moment are we free from "stuff" of this world. Maybe not physically, but the emotional binding that "stuff" tries to have on us. Rest in Him, have peace in Him, and finally Live in Him. When this happens, you too will not be silent about the GREAT things God is doing in your life.
My story continues, in two little boys in which are both being watched or tested for Autism, in a young lady who God is using soccer to take her to places in which she has and does share Jesus (so proud she lives out loud) and in Kasi, whose life will continue to be one of going to doctors appointments and check ups. I wonder, how many "new friends" will I meet in the waiting rooms. Kasi always gives me a hard time about that in a good way. If there is one place that people need to know the Love of Jesus it is in a waiting room of the major Dr.s Kasi goes to. I pray we shine His light brightly and we know that the right people will be there at the right time :-)
May God bless all of you with the ability to know Jesus and to LIVE OUT LOUD!!
I am sure there is more to come......

Nov 3 2011

2011-11-03T08:53:00.000-04:00

I know, what a title! Well that is because the fact that I am sitting down and typing this out on Nov. 3, 2011 is an amazing thing to me right now. Tomorrow more will come, but today marks one year since we took Kasi in to the hospital to have her surgery. Nov. 4 2010 is the date that she had the surgery that changed our lives in so many ways. Yes, she is the one who had the surgery, but at the same time God uses such events in our lives to change many many lives. These things I will write about tomorrow as I am still processing everything of this past year.
I am also in the process of re-reading what I posted last year on this date and then the dates after. It is God's story and wow did He tell it. I am humbled to be part of His big picture.
I can't wait to see what He has for tomorrow!
Blessings to you all....I will write really soon!
Jodi
PS...I am hoping to have Kasi write something as well!!

yesterday's trip to UofM

2011-05-21T09:24:00.000-04:00

It has been a long time since I sat down to update this. It feels like home sitting behind this keyboard with so many hours spent doing this and it is hard at times to put everything out there and knowing that our hearts and lives are being read by all. This is a good thing too, because this is not our story as many of you have heard me say now, but this is God's story. He is writing through us daily and we just have bigger pages at times than some.
First I want to say that the past 6 months have been a roller coaster ride. Sometimes it doesn't seem real that this has all happened in the past 6 months. I think it is because it has been a life journey for us with the last leg of it only 6 months behind us. At the same time, all of our time up at U of M doesn't seem like it really happened. Only at times :-) I have had opportunity to see all that has happened while up there and lives that have been touched, people that have been met, and prayers that were sent up on Kasi's behalf and I stand amazed over and over again. She was truly touched by the hand of God many times and I look back on some of the blog posts and the pleas that were put out there and I see God's work done. Sometimes instant and sometimes over time, but always God's hand, God's time, and God's will. God's will at times during the process I wish would have been different, but not that I look back I can see how incredible His plan was/is for us and especially in Kasi's life. I praise Him for that!
On to our trip yesterday, since I could go on and on about the "stuff" of life that I have learned and reflected on. Who knows, it could be the next blog post, or it could even be at the end of this. Depends on how my hands hold up :-)
Yesterday we had a follow up appointment with Dr. Eliason, who is one of her vascular surgeons. We went there knowing that she was having some "issues" with her belly once again and she has been getting sleepy. Now her sleepiness could be from being 15 and trying to grow and do it on less sleep than really needed. I am trying to encourage more, but she has other plans for her last hour of the night! It could be this boy interest she has right now, in fact, I know it is! It is a good thing they are good kids. (Jake you made the blog)
Kasi went in for her normal routine tests and the results were great! Her blood flow to her lower body is looking really good. We are so excited about that!! She then started to explain these belly issues with him. He said it could be a couple of things. It could be that because she had such an assault happen to her belly that she has developed scar tissue, or it could be that they have kind of created irritable bowel syndrome. These both kind of make sense for the surgery, but don't really make sense because of when she gets the pain. The pain is extreme and only in the morning. Really early morning! It wakes her up at times around 4:00am and she has a med that she takes and it seems to go away. She doesn't get any kind of pain all day long. She is tired though, and it could be just from not sleeping well, going to bed later than she should, or it could be a sign of something else. We will wait on this belly pain for a month. If it doesn't get better then she will have to see a specialist up at UofM for this. She is also taking her blood sugar 1 and 2 hours after she eats to see if that has something to do with her sleepiness. This will happen for the next 6 months.
The last thing we talked about with the doctor was the fact that he heard a significant heart murmur. She has a slight heart murmur before, but now it has increased. There could be reasons for this that make sense, but because she is Kasi we will go in this coming week and just have her listened to. Our amazing nurse talked to us on the phone on the way home and we agree that this might just be because of better blood flow making the murmur louder. We will go with that and enjoy our weekend!
Of course the last of this post has to be about more U of M moments. This time when waiting and waiting to go into her appointment we were sitting by a "older" lady, my dad wouldn't appreciate that since she had to be about his age, and we started talking. (of course this is hard for you all to believe about me) Well, it came out that she had grand kids in GR and they were from Saginaw. We also then talking about health issues and I had to add the goodness of God. We got to share a little of Kasi's story and she too is a Christian woman and all I have to say is she left in tears (of joy) for the goodness done in Kasi's life, and she said she will be praying for Kasi and her life. How good is God to put us out in the waiting room for a LONG time, and turn it into a place where we could encourage them in their situation with the goodness of Him. That is what it is all about! Plus seeing our nurses cry when we walk down the hall because they are overwhelmed seeing us, yeah those are great moments! We have genuine love for all of them up there. They are part of our family!
As for prayer needs for Kasi. We have some once again, but we know God is faithful to take care of our every need so we rest in the fact that all of you will join with us in your prayers for her again!
Pray that Kasi's belly issues go away, her blood sugar remains normal, the heart murmur is nothing but a noise, and that she can be done going to the doctors all the time. Those are the requests for Kasi. You know I have put on here prayers for others before and once again I have someone for you to pray for. Dr. Stanley is the doctor that did Kasi's surgery. The one of only 4 who has any kind of knowledge of her case and the only one in America. Well, he had surgery this past week and he is still in the hospital. We will be sending up cards, but prayers are the most important thing we can give him. He has been prayed for before since his hands are the hands you all prayed for in the OR when Kasi had her surgery, now his whole body needs to recover. He is looking to retire and it would be great it he could do that is good health. Please join us in prayer for him. It is amazing that God put us at "just the right time" to have our surgery so he was able to do it, and now to show him where strength comes from. He was the doctor that was amazed at Kasi's strength and said she was the strongest patient he has had. We love Dr. Stanley, and we will hold him up!!!
I hope you all have an amazing day today! It looks like the weather is going to be amazing and we are very excited to say we are going to a concert tonight as guests of Bowen's dad. It will be a ton of fun!
God is amazing! He is still at work, in and through us! Looking forward to seeing what He is about to do!
Jodi

Thoughts

2011-03-08T13:15:00.000-05:00

It amazes me how thoughts over time grow and how we can see God's hand in things. I look back at our time at U of M as such a blessing with new friends and new people to pray for and encourage. I think that until you have been down a road it is really hard to walk next to someone on the same road you once traveled. At the same time when visiting people it is a reality of what really goes on everyday in hospitals all over the world. The difference between some is the severity of the patients. U of M has much sicker kids in it than DeVos so the atmosphere is a little bit different. It also makes faith issues more real because people are not just relying on Dr.s but are trying to figure out if this God that we talk about is real and would care and love them enough. I pray that through all we go through as a family weather with Kasi, Aubree on a soccer field, Ben with all of his "stuff", and Nathan with his special needs, we honor God. I pray that others may see our joy in the middle of "life" because of Christ, not because of stuff of this world. We can try and cling to what we have in our homes and families, but all of this will one day be gone, and I am left with my Father, and that is enough.
So, today as I call U of M about Kasi and as I call Dr. Lirio waiting on results from an EEG and praying against seizures, and even as we wait for Ben's appointment at Pine Rest, I rest in the fact that God loves them more and nothing can ever take that from any one of them. It seems rare to have 3 kiddos that are special because of health issues, but really I have four special kids. All of them made unique and need different things from me as a mom. Aubree may not need physical things from me, but she is extremely blessed with her ability to play soccer. She also is a gift to me and my heart. Her wit and her love for God amazes me and she is an encouragement to our whole family. God has gifted each one over here and for that I praise him.
Here is our family update. Kasi has to have blood drawn today to check some of her levels. I would go into why, but it is too much to type :-) She also will be going to take a trip on Friday to U of M to see Dr. Eliason. I am not alarmed at all, I have to say that. She is looking really good and is feeling fine. She is just getting tired when she eats and her feet fall asleep on the bus or when sitting in a lazy-boy. This could be just normal Kasi, but they want to make sure. Seriously, I thought they would just write her a note to take a day off of school each week for a bit, or even for 1/2 day off through out the week, but that is not the case.
Now Nathan, there is really no news yet on him. We are waiting to hear back about his EEG. He did do great when having it done although he did not sleep. He was calm, which is amazing! I will let you know more when I know more. We are praying that it is "nothing". After all I know all about the heart, aorta, pancreas, and kidneys, we shouldn't need to throw in the brain. I would really have to consider going to school for my nursing degree!
That is all from the DeRoo home! We praise God for you faithfulness in prayer for our family. We are still going down our road of maintaining and we are so grateful that we are together as a family. There are so many out there that have lost a loved one. This goes back to my beginning. I don't take even the little things lightly. We celebrate all of life little and big things giving God all the Glory and praise. He is an amazing Father!
Pressing on....

God's plan...

2011-02-05T18:09:00.000-05:00

It is simply awesome to sit here at home after my first speaking engagement and here the encouragement that people have felt through God's story through us. It is also an amazing thing to here how others feel like they too can tell their stories of Faith and God's work in there lives. I am truly blessed to be called by Him to do His work.
A little update on the family.
Kasi is doing amazing!! She has been through school for a full week plus part of this one. She stills get tired, but over all is loving life.
Aubree is playing soccer and trying to get her mind back into the swing of soccer. I know that she has had a really hard time with all the stuff we have been through as a family and she has processed it all very well. God is doing things in her heart too through all of this. She knows that her soccer is a gift from Him and she is starting to focus on playing for him all the time. She too gets distracted by life and how it all fits together, but I can't say I blame her....she is 12. I have to remind myself how old both girls are because they are both mature beyond their years. Not only in life, but spiritual maturity. I am so blessed to see God at work in there life and see how they respond to His call to them.
The boys are doing really well! They both have had their eyes checked now and believe it or not it is NOT because of drugs in their system when they were born. It is heredity! Yep a genetic thing that they will monitor and help in anyway they can. Sometimes they can have a patch and sometimes surgery or glasses. Ben did get put in glasses this week which he loves. It helps him see and focus. He is so proud to be like his dad with his glasses too. All he wanted was for his dad to like them. So very good to see too. Nathan will be watched for a while with Ben. I pray that this is something that they learn to cope with and it doesn't cause any learning problems. We also pray for their brother who is with their birth mom. The chances of him having this is great and hopefully he too will go to a specialist to determine if he does and gets the proper care. We pray for him regularly, daily, actually several times a day. God is good and holds him and grows him too! We pray that he will grow up knowing our Savior and know about his brothers who love him very much.
I am filled with joy over the fact that now only is God using this journey He has us on, but He is growing all of us up in Him. I am so blessed!
Praise be to God the author and perfecter of our faith!
Jodi

New Day!

2011-01-23T19:36:00.000-05:00

Tomorrow will be Kasi's first day back to school, full time with normal classes. It is very exciting for all of us, believe me!! Not only does she need this, but all of us need her to go back too. We all love her dearly, but she is all of 14, and I know most of you can understand that. Plus, Kasi and I are so much alike that we might fight a little. We maintain a GREAT relationship, unlike a lot of teenagers and parents, which makes the bickering even harder. Her overall health is great too. We are amazed at the progress she has made and at the same time, we are not surprised because that is just what God does for her.
We are also starting to process everything that has happened over the last couple of months. It is crazy, but truly it seems to be a blur at times. Emotionally I don't think I really processed a lot of it, that is until last night.
We watched a movie called, "Letters to God" and I am sure a lot of you have seen this movie. I must say, that thoughts and feelings in that movie were overly real. Kasi our strong one who never cries in movies, was weeping and I was too. She felt all of the things that the actor was writing about in his letters and although he dies, Kasi is still with us. We are so blessed to be able to share more years with her and I celebrate that everyday. Not just with her but all of the kids God has in trusted to me.
My heart began a "remembering" time last night, which I think is good, of remembering and feeling all of the "stuff" of being up at U of M for that many days. It is more than just a thought process it is a cleansing for me. Kasi too felt a little overwhelmed with emotion, but feeling everything she faced too was a great thing for us. We now look to the future of God incredible story that is to be told through us. It is humbling to know God is choosing me/us in this way. We will be obedient in all we do and our road and story doesn't begin or end with Kasi. It keeps going and going with each new day.
We currently are facing testing for both boys for autism or even ways to better help them grow and learn. They will both be seeing an eye specialist on Tuesday for a most-likely genetic eye condition. Plus, they will be able to tell us if there is some neurological going on for further help. Nathan has started school at Ottawa Area Center in their infant program and he is doing awesome with that. Ben, is learning really well at school and his teacher is such a blessing!! I am not sure what the road is that we will be going on with these boys, but we know that God is with us all along the way. Our story, really God's story through us will continue. I will keep sharing because I feel like these posts, well they are our letter's to God.
All of your prayers for our family are felt and appreciated. God is doing amazing things in our lives, each one of us and that is a blessing. Hearing Ben pray brings me to tears. His heart and compassion for others is overwhelming too. God is doing great things in his heart and that is something I continue to pray for.
God is sooo faithful, good, and incredible! May His name be praised today and always!
Now, for me.....on to speaking. Seriously???

A new year...

2011-01-05T21:52:00.000-05:00

I can't believe it is Jan. 5 already. Tomorrow will be my first day back to work and Kasi is actually going to school for 1 hour tomorrow. Nathan had his first day of school today at Ottawa Area Center, which he did pretty good I guess, but it was super hard on me. Over all we are starting to get back into the swing of things.
Over the past few weeks I have been reminded by several people that there are a lot of people that read this blog. Even more than what I realize! I have to tell you all a little something about this blog too. When I sit down to put something in here I always have something to say. I don't sit down and just write and sometimes that is why there are many days in between posts. Along with that, Kasi is home now and the day to day stuff is not very interesting.
As I sit here today trying to put all of my thoughts into a short update I seem to be at a loss for words in how to describe my thoughts, feelings, and emotions. I have reflected on the last two months and still I am working on remembering all of my feelings through the process, and at the same time I am brought back over and over to where this all began. "The Whole Story" post that I posted in October. There are so many parts even in that post that is missing to the true "whole story" that I don't even know how to begin to share. I want you to know though that I am being challenge to start to share. I really mean challenged too.
Although I like to talk, public speaking is something that I never feel adequate to do. I am not sure if it is because I never want to be that boring person that everyone falls asleep too, no, I know that can't be it! I do know though that it is because I have so much to say, and so many thoughts about our God and how incredible, awesome, and great He is that time limits might be a problem and being able to articulate what needs to be said. So, now I am relying on the Holy Spirit not only for comfort, but for guidance as well. I have in the past, but this is a new road to go down. This is also a request from all of you faithful prayer warriors to pray for me, pray for Kasi because she too knows that she has been called, she just doesn't feel ready yet or that this is her time. For me, the time has come I guess :-)
I have also heard over the past few weeks that the people that have been impacted by this blog is overwhelming. In fact I don't even know the extent of it all and I don't need to. What I do know is that this blog and stuff in it that impacts and changes lives is not because of my writing but because of God's working. He is the One who works in all things, through all things, and before all things. That is the awesomeness of our God.
I was riding home from UofM this week and we were listening to a sermon from Grant Community Church, in which I have to say that if you go to that church you are blessed, and the minister's sermon was on from Calm to Caous to Calm. The reason we were listening to this was because he used some of my blog for a sermon illustration. I have to say, first to hear him say he prays for Kasi brought tears to my eyes because he is a stranger to me, and yet a brother in Christ. God's family. He then went on and quoted some of what I had written and that was a humbling, overwhelming, personal, amazing, and truly I don't have the right words to describe what I felt. I am TOTALLY ok with it, don't get me wrong, but to hear someone read my heart, that was a very different feeling. His message that God gave him could have been my heart right out there and it was great, I actually wanted to shout "amen" a few times, but of course in the car with Kasi watching a movie, well.....I said them to myself, remember God hears my heart.
I am not sure where God will be taking this blog, Kasi or myself in the next year or more. I know that our journey in Faith is continual and we will continually be updating and growing. I also know that I will be doing a little chapel on Friday, and a women retreat in Feb. already. That is my onward journey, and Kasi's will be one of more healing and understanding of how incredible she is. She does not see how she is "different" in her thought process of things because she doesn't understand what it is like to not know God as she does. She doesn't get what it is like to having never felt God touch you or hear God or have the peace that passes all understanding. All she knows is that fear doesn't grip her. She was not fearful going into this surgery, and she was not fearful during her recovery. She was just Kasi, and she truly let God fight her fight to survive. That will be her story, when she can fully understand it herself.
Please stay in prayer for our family, we have a lot still going on. Health wise, well Ron was in the ER overnight on Christmas for chest pain. His heart is fine, but he does have Barrett's disease which he will be seeing a specialist for. Nathan for his development as he is experiencing all new things now at school, and he will be 2 next week!!! Aubree, well, just to keep her safe and playing soccer to glorify God. She loves Him with all of her heart and she does play for Him. She will be playing her normal soccer stuff this year, plus she added a super "y" team for the summer. Ben is doing great! He too is falling more and more in love with Jesus everyday. I love talking to him about Jesus and listening to him, in fact tonight he was asking about how God and Jesus can be the same and different. I love moments like that! We are all good as you can see, we are living for Jesus in our everyday and praying for a place to call "home" where we can worship our Father together with His/our family. We will be faithful to His call on times he wants us to speak and we will continue to listen to Him as to what He wants us to say. Even on this blog!
Be Blessed everyone in this new year!! We will be on here, hopefully weekly!! God's blessings to you, and may His love surround you all.
Jodi

Merry Christmas!!

2010-12-24T20:28:00.001-05:00

Merry Christmas to all!! I don't know how to put all of my feelings into words this year. It seems that there is so much on my mind. I sit and watch our family being all together knowing how precious each life is. I am so blessed to be the mom of some awesome children. I hear Ben pray and it is a blows my mind where he came from and now where he is, and Nathan too. So many people tell us how lucky they are, but I never see it that way. We are the "lucky" ones. Even though I never say the word lucky, I feel it is just another one of God amazing works. He sure has filled my heart and I feel honored to be His child.
This Christmas we are spending most of it at home. We can't have any sickness come into the house. Kasi is doing really well and I am super happy to be home. Kasi did have a doctor appointment in which we found out she has actually lost 2 lbs since she has been home. Her doctor really made it clear to her that she needs to eat even if that means taking her meds to eat. Another thing we have to do is keep the house warm so she doesn't waste calories keeping her body warm. So, we set the temp at 70 and that is where it stays. Believe it or not she still wears a sweat shirt and sometimes a hat because it is "cold".
I have watched her go through so much in the last 2 months that this weight thing seems so little in comparison to everything else. I know it is very important too because it could put her back into the hospital. That is why she can't get sick either. Her body doesn't have the strength to fight it. We know our God is amazing and His hand in on her, so we are smart with our choices, and we know He will do the rest.
So, all of my reflecting on my heart and what our family has been through, this is what I have been thinking about during this Christmas season. Something new to me that is for sure, but it makes sense to where we are.
Christmas Eve and Mary and Joseph were searching for a place to stay. How long was Mary in labor? How far did she have to walk? How did she feel knowing the King of Kings was about to be born and there wasn't any place for Him. Now it would be hard just not being able to find a place being in labor, but to think that the baby you are carrying is "the baby". Of course she didn't fully understand what His work was going to be about, but she knew He was special and here they are lying Him in a manger. We always think about how awesome it is that Jesus was born in a manger because it shows His humble heart, but what were Joseph and Mary feeling and thinking? I know how I would feel as a mom, and a mom of a first born. We wouldn't settle for anything less than the best hospital.
Then to watch Jesus grow. How great it must have been as a mom to watch Him learn and experience life, knowing all the while He was God's Son! Think about watching him at the age of 12 or how they must have felt when they couldn't find him. Oh My, loosing a child for a moment is one thing, but the responsibility they must have felt knowing how special He was to the world and they didn't know where he was. Overwhelmed I am sure!
Then on to watch Jesus minister. I am sure it was kind of hard to watch some leaders of the church talk bad about your son. The talk that must have happened in "his home town" where he was not welcomed. As a mom, I might have been angry, hurt, or both. I just wonder how was it to be his sibling? To see so many following him, and to hear him speak with such wisdom. Making the Bible make sense in a different way. In a way that touches their hearts.
All of this, for years being together, growing, learning, and watching. Over 30 years being a family, bound by flesh of this world. Mary did you know, that your baby boy, was the Saviour to the world. How did she feel seeing him suffer? How was it at the foot of the cross of her son, hearing all of the mocking and seeing what they were doing to him? How did she bare such pain............for me. For Me. For Ron For Kasi. For Aubree. For Ben. For Nathan. For Anthony (the boys brother who we pray will grow up knowing Jesus!)
For You. How did his siblings feel? How was the family the day after? How was their grief? They didn't have the full gift of the Holy Spirit yet. They did not know he was going to rise again for the world! (well, they would have if they would have listened to all of his teaching, but it didn't make sense to them...yet) How incredible, the baby Mary and Joseph were struggling to find a place to lay down, was hanging on a cross in front of them. I am sure it didn't make sense because he had not been a "savior".....YET....He was! Baring our sin and shame, so we can have this incredible gift of being close to our Father once again.
As I reflect on Christmas this year, I reflect on the whole story. I have seen our family suffer through some circumstances of living in a broken world. I have also seen God's work not only in our life, but through others all over the place. I am touched that God would choose us to be the faithful ones who could share God's good news that is for all people. A Saviour has been born!! And even more than that, He is living here with us. Jesus is going before us, along side us, and sometimes pushing us from behind. I have felt His peace and know His love even more today.
Be Blessed this Christmas with the love of God that is greater than what we can conceive. Even if you are in the middle suffering or hard circumstances, there are people who have walked this path before us and God was with them and He will be with us. He will never leave us or forsake us. His mercies are new every morning, great is His faithfulness. Thank you Jesus!
May you all celebrate the Christmas Miracle, the whole story, the salvation of all who believe, being laid in a manger......

Fragile fingers sent to heal us, tender brow prepared for thorns, tiny heart whose blood will save us.....
Welcome to our world!!

HOME

2010-12-16T10:39:00.000-05:00

I never knew a bed could feel so good! What a great night of sleep with no beeping, doctors coming in at all times of the night and no being woke up when Kasi would have her vitals taken. Unlike when she was a baby and we came home, I was not nervous at all about her vitals all night. It was a great feeling! Kasi slept great too. I think all she needed to feel better was to come home. She has not taken any meds yet today which is great!
As I sit here and think about the best part of being home, I really don't know what tugs at my heart more? The joy in the boys as we walked through the door, watching all of the kids being together last night, or just sitting watching them play, laugh, and be silly together. I have missed this so much. Even the craziness of it all.
Today we will be putting the finishing touches on our Christmas tree and I am very excited about that. All of you who know me well know that I always put Christmas music on, and when it is all done, we all sing O Christmas Tree! Not the whole song, but just enough to all smile and laugh.

Here is where we are at with Kasi. We know that the doctors did not repair her whole aorta like they really wanted to. The reason why is because of a few things. The main reason is because when they shut down the blood supply to the lower extremities they have a time frame to get things done. This time frame from start to finish is about 30 minutes, but with Kasi they shut her blood supply off for 60 minutes and they still were not into the lowest part of her aorta. They knew that they were out of time and when looking at her lower aorta they felt like it was a better decision to stop then to try and continue and fix the last part. This is because the aorta, by her renal vessels and below, looks to be elastic enough to grow with the proper blood pressure to it. So, with exercise it should start flowing better, but we will not know exactly what will happen so we will have many follow ups in the months and years to come. This is a normal for us though. Her kidneys are getting good blood flow to them, but we will need to start seeing a kidney Dr. again. Our previous kidney Dr. has moved on so this will be a harder transition. Not because the new Dr. in the office isn't good, but we had the best. We heard from the specialist at U of M that Dr. Cai is really good too, so we are happy with that.
Kasi also will not be able to go back to school until Feb. 15 ish. I think that is worse case scenario. Looking at her you wouldn't think she would have to wait that long. We were told 6-8 weeks from yesterday, so the count down begins! She will then go to school 4 hours a day for about 2 weeks. It takes a long time for her body to get strength back and we do have a walking plan we need to start as soon as she feels good enough to go out and do it. I am thinking we will start today. Outside and about an 1/8th of a mile. This will take all her energy and she will most-likely need a nap after.
As I start to look back over the last month and more I see all of God faithfulness to us. I look at the fundraiser that so many of you were involved in and the amount that was raised I was shocked at first. Now I see it as God knowing how much we really needed. I was thinking on the way home yesterday how I really didn't have that added stress to our stay up there. It was a blessing to be able to go to a hotel room and just be with Kasi for bit everyday. We felt like we "escaped" and it was a place for family to stay when they would come and visit. We didn't have to worry about how we were going to pay our bills with Ron being off and me being off too. It is such a God thing and when He says "don't worry about tomorrow" He means, I have it all taken care of. How precious we are to Him. I will end today with these couple of verses.

Psalm 34:19
A righteous man my have many troubles, but the LORD delivers him from them all.....

James 5: 16
Therefore confess your sins to each other and pray for each other so that you may be healed, the prayer of a righteous man is POWERFUL and effective.

The body of Christ has come together in a powerful way and I stand in awe of all of you who were called to pray for us through this whole thing. It wasn't a church group, school group, or one specific thing we are involved in. It was the whole body of Christ working together without denominational boundaries, just being God's hand and feet to us. That is who we are. As a family we have always been "different" in the fact that we choose to try and not be bound by titles and we are not going to say one church is better than another. We live to honor God and bless those around us with the blessings God has given us. Our cup is over flowing with blessing and that is because of all of you. Young and old, students and elderly. Thank you!

tomorrow

2010-12-14T10:10:00.000-05:00

Well, we were told today that it is a very good possibility that tomorrow we will be going home! You know, I feel like it is really time. I can't explain it, but it is like we are at the end of a good stay with extended family and you know when the end must come. When some of the nurses got the news they have already given her hugs today because they are not working the rest of the week. It will be interesting to see how today is and if/when we go home tomorrow how many tears will be shed.
Kasi has been doing well. She still fights nausea and lower abdominal pain, but she is on meds to regulate this. We will be doing a follow up with our pediatrician for all of her "stuff" at home and hopefully have minimal trips back here. As for her surgery and the repair that has been done, she is doing great! She has really recovered here from that. We know though that she doesn't have much strength at all. As good as she feels, her body has gone through a ton and even a walk to the cafeteria yesterday made her muscles sore. It will be a while for her to gain that back. The doctor said it could take months for her to feel on top of it again.
Over and over we have been remind of God's goodness. We focus on His goodness to us and showing others His strength in us through this. Today I am just sitting filled with joy with all the good things that are ours. We are very blessed and we know this. And today we celebrate this too. Kasi will have a Doppler study done on her legs today and we know God has used the wisdom of the doctors to correct her blood flow. We are excited to see the results! We know how well she feels and that in itself is a testimony to the greatness and success of this surgery. Praise God from whom all blessings flow. That is not a one time out flowing, but a continual flow! Let the river flow, right from the throne of God!
Be blessed today, and hopefully my next update will happen at home! Pray for her to gain weight and have enough intake, that will be the key!

cookies!

2010-12-10T21:27:00.000-05:00

Hello to all on this great Friday evening! Kasi is doing amazing and it is really hard for me to not pack her up and say "good-bye" to this place and come home. There are things that must be done here yet and of course we will continue them through. She is going to have to eat high calorie foods with little fat. That is interesting, I think she is just going to eat lots of pasta! She loves it and well, it has a ton of calories which will be a great help to get to the 2000 calorie mark for the day!
We also have a few more conversations to finish and a couple of nurses to say "good-bye" to. Some are not going to be working for a few days, and well, you never know we could be gone when they get back. Yes, that is becoming a possibility.
And the last thing is we have to hand out one more tin of cookies. Yep, we handed them all out and we had the privilege to give testimony to who God is through this! It was an amazing thing for us to do for all of our doctors. I have to say "thank you" to all the Unity students that made the cookies. They are amazing!! And you helped plant a seed to many up here and put many smiles on faces of doctors who sometimes don't hear all the goodness of God. We made sure we told them all who the cookies came from and they were all really impressed!
So, today we are very hopeful to go home on Monday. Kasi still thinks it will take longer, but I am really realistic to her going on Monday. It is a great journey that we have been on and will continue on from here. It will be even better to move this journey back home where we can grow together as a family again. I am convinced that our journey will continue in many areas of life. Our family is full of these stories of faith and we know the stories will continue because God never stops writing His story. He is with everyone who reads this too. I am wondering what would your page read? And would you allow everyone to read His story through you? It all goes back to something I have said along time ago, "do you have to say something? OR do you have something to say!" We have something to say, and we are saying it loud!
So I end tonights post with this. Yesterday when waiting in line for the bathroom a mom came up to me and said, "I have notice you have been here as long as we have and I don't know how you do it. How do you stay so upbeat and strong. I am exhausted!" I talked to her for a little bit and realized she really just needed to talk. As I listened I heard bits and pieces of "church" and "pastor" but never really heard anything about prayer. I didn't say anything about that to her of course that is not where I am going with this. Then she told me it had been a long 3 days and she asked how long we had been here. I almost felt bad, but then I thought, no God can show her His strength even greater for her knowing how long we were here. So I did tell her. We then parted ways, and I believe there is one more conversation that will happen with her up here. God is so good, and yes we have something to say about that!
Keep praying and praising! And just so you know, even through all of the struggles and frustrations, we have never lost our joy! True joy can never be stolen! And now we are living in that joy. Love to you all!
For I know the plans I have for you declares THE LORD!!!! Plans to prosper you, NOT to harm you, but to give you HOPE and a FUTURE!!!! Yes, the Lord declares this about Kasi.....hang on to your hats, His real work has just begun!

Good news!

2010-12-09T17:10:00.000-05:00

So here it is, the good news. One of our doctors said the word "home" and Kasi has moved up to a low fat diet. What this means is they are thinking the pancreatitus has gone through it's course, and the lower abdominal pain is coming from extra bacteria that is in her bowels. We are hoping that the pain will go away after she is on an antibiotic for a bit. Home will come as soon as she takes in enough calories, with her belly tolerating it and her numbers trending down. We are at 108 right now and that is higher than we have been in a while, but not super high. We will see what happens when we add some fat into her diet. Pray it stays down and that she doesn't feel nausea after she eats.

Lamentations 3: 22-26
22 Because of the LORD’s great love we are not consumed,
for his compassions never fail.
23 They are new every morning;
great is your faithfulness.
24 I say to myself, “The LORD is my portion;
therefore I will wait for him.”
25 The LORD is good to those whose hope is in him,
to the one who seeks him;
26 it is good to wait quietly
for the salvation of the LORD.

We are in the waiting process but we have Hope in the One who holds it all in His hands!! Good things are happening. We had a great talk with her main doctor this morning who gave Kasi an encouraging word about her faith and her testimony to him. He shared how has learned once again to praise God even in the middle of struggles. We then gave him one of our gifts and he read her verse and said, "that is why you have done so well". He sees God's strength in her and is open to talk to us about that. We also told him how when we look at this it is only a moment in the whole big picture of things, and how this really impacts who we are in God, and how we grow into people who better reflect God's face. Praise Him for people seeing that through this!!

Chris Tomlin Indescribable

2010-12-07T21:28:00.001-05:00

numbers up....

2010-12-07T21:28:00.000-05:00

Hello to everyone. Today I started out with the verse "this is the day the Lord has made I will rejoice and be glad in it". What a perfect way to start today. Not that today was a good day, but a frustrating day. The verse had to stick in my head from beginning to end because of a few things. I feel like we are going in circles and not making progress up here. I am hoping to be proved wrong the next couple of days again, but with all of Kasi's pain yesterday after she ate and with her numbers going up to 106 today it just seems a little over whelming and confusing. And then on top of that we have a set of doctors saying she can only have no fat foods, and another group saying she can only have no fiber foods. We got a list of no-fat foods here and then the dietitian came up and sat down to show us what off that list Kasi could have. Well, we have 8 things she can eat. Corn flakes, rice crispys, mashed potato, baked potato no skin, grapes, strawberries (if they have them), sliced peaches, and lite and fit strawberry banana yogurt. At least she doesn't need too much time to make up her mind when it comes time to eat :-) Tonight she had mashed potatos. She was happy with that.
Tomorrow will be a better day. I had to get over today, just my attitude and my broken heart of her numbers going up and the fact that I am missing the kids christmas program tonight. Yesterday was Ron's birthday, and Thursday is our anniversary. So many things that are being missed because of being up here in a holding process. I don't know if you can read my heart in this, but today is a day in which we had an over whelming feeling that we really want to go home. I know it will come, and I know that God will give us the strength to hold out strong. I am still in hopes for Monday, I am thinking that will be a miracle at this time, but I do believe in miracles so I am not budging. I also know that I will choose not to be disappointed if we don't go home. Kasi and I are resolved to just try and be home for Christmas. I am just hoping that the decorations will all be up when we get there. It is hard for Ron to get them up being a single parent right now though, so we shall see.
Through all of this we are still amazed at our God and the great things He has done. The doors that have been opened the relationship built and seeds planted. And that is only us up here, we also know that people's lives are being impacted by the this blog. It seems so simple to me writing about our lives, but I know that God's work is being done and if others can see that through us we are happy about that. There is never any question about how big our God is and sometimes we just need a really good reminder and for us that comes in the form of a song. Sometimes it is through scripture, but today, this song. For all of you who have snow and for those who have never put our smallness into the big picture of God's world and God's work, this is for you. We are humbled to know that God, the creator of the universe, knows our name and is using us to further His kingdom. May His name be praised!

40 days??

2010-12-06T18:37:00.000-05:00

Ok, so I know there are a lot of things in the Bible that happens in forty days. And well, we just found out our hopes for going home this week are not really realistic. So, next week Monday will be the 40th day of us being here, so I am thinking out journey should be over.
We have a new room mate today again. She is a strong 13 year old. Someone we can relate too. I am thinking she will be going home soon. She had a surgery today and she is out walking around waiting to eat. Once her belly does it's thing, she will be eating and going home. What a nice thing for her, plus we have someone else that can use our sign :-)
Today Kasi had 3 carrots, 3 slices of cucumber, peas, and fresh fruit. All of which should be fat free, much to our surprise there is some fat in those. Well, she is now in pain in her belly, but we are thinking it is not from her pancreatitus, but more bowel pain. Although we are not totally sure, the Dr.'s ask her where her pain is when she has it and it is not in the place it would normally be for pancreatitus. All of this to say, her belly is starting to work after a long rest! She is going to try and have a baked potato here in a few minutes and hopefully that will settle everything and she will be okay. We will find out soon. We also were told that her magic going home number will be around 50 or less. We are at 94 today. She also has to do this diet thing one day at a time. When she is getting enough calories in she will then be able to get off her TPN.
Her PICC line no longer wants to give blood which is a pain because that means they have to draw blood every morning with another poke. Not a big deal, but it is a use for her PICC line and it bums Kasi out that she has to get woke up now and poked. Just a frustration. We are thankful it does flush good though because if it didn't profuse we would have to do something about that. As it is, the PICC is fine, and that is a plus. I remember when she got the line in I was kind of questioning the whole thing because I thought, "why would they put this in if she will start eating in a couple of days". Little did I know at that time. She is going on 3 weeks with the PICC. Super glad she has it now.
Our biggest request is going home. We want to go home, but we want to be faithful with the time we have up here. Help us not to get near sighted and not see what God would have us say and do while we are up here. Also help us prepare to go home!! Pray for God's hand to rest upon Kasi and heal her belly, taking all the pain away. Pray for Monday to be the day! That is next week you know, and if they say not this week, well let's go for Monday!
Love to you all!! Thanks for all the cards and stuff. I know it is hard to think and pray for us all the time, just know we feel them all and love them all!! Strength for today and bright hope for tomorrow....Blessings all mine with 10,000 beside. Great is His faithfulness! (thank you Debi)

day 32...

2010-12-05T21:14:00.000-05:00

I wonder sometimes if all of these posts sound alike. We have been here so long and this time is flying and dragging all at the same time. I can't believe that 32 days have gone by, but my heart sure does feel it.
Today the family came up. It was so good to see them, and to see Ben and Nathan playing and just loving on them. I am so blessed to have all four of those kiddos. Aubree was her funny self too. It was busy, but my head just spins with them all being here which was extremely nice, until they leave. It is so hard to see them go. It is like a really sad movie and we are playing the roles. Kasi and I were on her bed, and Kasi just breaks down when they go. Of course I don't do much better. It has been too long! At the same time we know it has been just the right length of time because our time here is important to God and His work. It is not about us. We have some serious things to pray for us here and nurses to pray with. I am serious about that too. It is may sound funny to some, but we have had nurses open up to us and we actually have a date to pray with a nurse tomorrow at 10. We have not only a been patient of nurses, but we also have been visited by one too on her day off. Of course bringing goodies! We also had a room mate that we got to talk about God to, and see good things happen for her while we were here. There have been moments where I think we need to go home, and other moments that I think we need to finish what it is God has called us here for. I am not wishing Kasi to be sick and most of the time she is feeling good. Although she is still loosing weight and has her times of nausea, she is doing really well. If you know anything about pancreatitus, you would know that it is very painful. I am saying Kasi really hasn't struggled with pain at all. Tummy aches and nausea, but the pain that some describe is not something she has had. Either that, or she is once again is showing God's strength in her and His grace which is always sufficient.
We have grown so much up here as people and together as mom and daughter. It is a sobering thought when I look at what has happened up here in our hearts and in the hearts of those around us. Everyone who works up here said they are going to have a parade when we leave and I KNOW there will be many tears on that day. We have new "family" up here and people that we now love too. I know some of their life stories and challenges. We have more people to pray for and with. And of course more prayer warriors for Kasi.
Tomorrow we will see what her numbers do once again. She is at 90 and is starting to eat yogurt. This seems to be going okay. At the end of the day she gets "funny" feeling and needs something to keep it all down, but over all it is going well. We are praying for low numbers and real food. As soon as she can show she can eat three meals and drink enough, we will be on our way. This week looks promising!
Thank you for all of your prayers! They are a blessing to us! Our God is awesome and we are looking forward to what He is doing next in our lives. We just pray that the next thing will be at home!!

Happy Month-aversary

2010-12-03T21:29:00.000-05:00

Yep, we have been here a month. People say Happy Monthaversary and Kasi's reply, "where are my flowers?". Too funny! Laughter adds years to your life, and well we do a lot of it these days. Yes, we still smile and laugh all the time. Only moments of the day do we feel a little like this is our new home, but most of the time we are just hanging out and making things.
We were given a gift of beads, wire, and ribbon that we are putting together for the nurses and Dr.s up here. It is pretty fun giving them away, we have seen the simple "thank yous" to tears. They all include Kasi's verse and the Christmas story. Very fun indeed! And yes for all of you who know me well, I am crafty too. It is fun! And it is NOT scrap booking.
Yesterday was a day that was a ho-hum day. Nothing much different. Her numbers went down yesterday to 95 and that was great news. We were on our way to lower numbers and maybe real food. Today, well, her numbers are back up to 110. She is staying on clears although she is restricting herself from eating anything because she does not want a feeding tube. They were talking that if her numbers went down even a little she would be able to have some active cultured yogurt. Not yet though!!
Only one time today did I have a few tears and that was when yet another doctor came in here and told us how amazing Kasi is. She went on about her strength, courage, and what she has gone through and the way she handles life. All I could do was tear up, realizing how proud I am of her, humble at how good God is, and overwhelmed at everything that she has been through. They just know this hospital stay, we know her life. She just sits and smiles at the Dr as she talks to her and I just stand amazed. Kasi had impacted people here for God! Everyone knows that Kasi and I give God all the credit for His strength in her, and well, it is supernatural.
Kasi has one request that she would like everyone to pray for. This is the desire of her heart. It is for her numbers to go down. We know that God's perfect timing is what we pray for and then I would ask for more strength and wisdom in the days ahead if we have to continue down this road further. But if He chooses to drop these numbers of hers and heal her pancreas soon we will be very thankful! We rest in His perfect will for us here and at home. Our desire is to be home, it is time! We feel stretched and far away. I am ready to love on my boys and not live through text messages and pictures. I am also ready to listen to all of Aubree's stories of the day and be her mom, not from a distance. I love them all so much and just to be together around the table with a meal with everyone healthy is more than my heart can even take in right now. Not seeing Nathan is really bothering me too. Of course they keep growing at home and he is starting to talk. I am going to miss their Christmas program this week and that kills me inside. Not setting up Christmas at home is breaking my heart because this is my favorite thing to do this time of year. We always play Christmas music and spend time together getting it all out. Always with a few laughs too. I could go on about my feelings and longings for home, but that doesn't change life up here. We just focus on the todays and know that God holds them all!
Praying those numbers down in Jesus name!!! And the peace of God continue through this place.
Love you all!

4 weeks later

2010-12-01T20:31:00.000-05:00

Here we are 4 weeks since we have left home. Reflecting on it all seems a bit much yet, but slowly we are talking about stuff of the first days. I am not sure I remember it all, and I know that Kasi does not. She doesn't even remember all the tubes and stuff she had in, which she went for a walk with. It seemed like she was so with it, but now I know that that is not true at all. I also know that she walked extremely well, which I half knew, but seeing others on the floor come out of surgery with a surgery that is not half of what Kasi's was I really understand the shock the PT had when he said we were going to walk and she walked. She just got up and walked! Now she cruises the halls with her friend "the tree". (that is her IV pole)
Today she was allowed clear fluids only once again. This is because her levels didn't go down anymore, but instead they went up. She is now over 100 for both enzymes. They did allow her to have clears because she is not in pain. She does have a little nausea, but they can give her meds for that and it seems to take care of it. We will see what her levels do tomorrow. I am not sure what they will do if they go up, I do know that when they go below 80 Kasi will be able to have fruits and veggies. Absolutely NO fat. That might be a bit yet, we will get to a low fat diet first and see how that goes. The enzymes that they watch are ones used to help the tummy digest fat. It is produced right away when something goes in your mouth. Amazingly those enzymes are located in your saliva too. So, it is not a surprise that her levels went up a bit, but they shouldn't go higher unless her pancreas still is not working properly. Tomorrow will tell us a lot. We will continue on clear liquids until she drops her numbers again. Today she had 1 whole Popsicle and a 1/2 jello cup. She did have water too, although not a full glass yet. We are taking this one day at a time knowing this is not a process that can be rushed. Once again they told us that she needs to be putting some of her weight back on before she goes home. Then they will feel that she is clear and will not have anymore pancreatitus. She also will not get it back, because it is from surgery it is not something we will have to worry about in the future. I know some can have a flare up, but those conditions are different than Kasi's. That is very good news for Kas.
As you can imagine this is getting really hard as Christmas is getting closer. Ron has done some Christmas shopping already and I am sure he will be doing more :-) I look online during the day, and then tell him where to go and get the deals. It will be much harder to do for the girls.
Also, we always have our house all decorated for Christmas with our tree up and all our lights all around. I can't imagine when we will be doing all of that. Kasi and Kelly (young life leader from Unity, and my friend that my kids are stealing from me....) made some Christmas stuff today. Some of that was paper ornaments that I hung from our window and yesterday Kasi and I painted some Christmas snowmen. We are trying to get into the Christmasy spirit up here. We are hoping we won't have to much longer, but it is December!
Today over all has been a good day. Kasi struggled with a few tummy things, but nothing her meds couldn't handle. Tomorrow we will see what her numbers did, and we are praying they go back down. She is handling this all extremely well. She fights that sick feeling and just moves on with her day. Unless she has to be close to a bathroom, which happens too with all of this, she wanders around finding things to do and looking outside.
Thanks again for all of your prayers! They are a blessing to us! Please keep our family back home in your prayers. Ron is doing amazing with them and so are Grandpas and Grandmas, but it is truly not the same.
I will update again tomorrow, unless of course there is no news. Then just re-read this post because it will have been another day of the same.
Blessings!

The three spoons of jello is still down!

2010-11-30T21:14:00.000-05:00

Yesterday I was telling you how she would be able to start a clear liquid diet after 9:00 yesterday. Well, she has some water and she sucked on a Popsicle for a bit. After about 45 mins, Kasi was in a ton of pain and had extreme nausea again. This was an awful blow to her last night. She just couldn't get comfortable. She tried every which way and it ended with some dry heaving and three meds to get her over the pain. It was not a fun experience as you can imagine and we didn't know what today would bring. We thought her numbers would go up and we would be back to the beginning today. Much to our surprise that was not the case. Today Kasi could still do clears and her numbers did not go up. We are very thankful for this!! It is a praise of ours for sure!
Right now it is 8:40 pm and Kasi is just starting to feel a little funny. She is getting some meds to try and stay ahead of it tonight. Hopefully that works! We are praying it does and tomorrow will be an even better day with maybe a little more jello! She had about 1/3 of a jello cup today and about 6 oz of apple juice. Notice that I didn't say 1/3 of a cup, I said 1/3 of a jello cup and we all know they are not big. Just to make sure we get a good perspective on the slow process we are in. We did talk to the Dr.s this afternoon again and they are hopeful that she might be able to go home by next weekend. She has to be eating 3 good meals and drinking at least 1000cc's or 1 liter. It is hard to believe that we will have been here for a month. Crazy!
A lot of things have been brought to our attention here though. People and their struggles, more than just physical needs. I feel for families who not only can't be together, there are families that can't have either parent up here most of the time because of work. Not that they can't take off, but they can't afford to take off. It breaks my heart and reminds me of all the blessings we have. God has created our family and brought us all together for His perfect purpose!
Today we praise him once again for His greatness! We see Him! So, that is my request from all of you. You have prayed many things on our behalf, but praise our Father for all His goodness to us is number one!
Be Blessed!

Angio is done!

2010-11-29T19:17:00.000-05:00

Today Kasi's angiogram was finally done. We are very excited about this because this is a sign of the turn around for her. She is still lying flat and only has 1 or 2 more hours to do so. She is kind of excited to have it over too. Relief today came in two great things. First, her surgical sight looks great inside of her! There are still small narrowing to her belly and there is a narrowing just past her surgical sight, but it is looking great! The narrowing is so small compared to the one that she had before it shouldn't bother her at all. Over all we are really happy with the news. We are not sure what Dr. Stanley's opinion is on it yet. I am sure he will be happy with the patch though.
Second, we were told that at 9:00 tonight Kasi will be able to start some clear liquids. She is going to start with some water and having about three swallows every 15 mins. If that goes well, she might even have some apple juice before bed. How exciting! We are not going to push it though because it is night time and we both want to sleep. No room for feeling sick or being sick for that matter. We are praying that doesn't happen, and being smart helps.
What a great day of progress today. We are looking up and praising God for taking care of Kasi through everything today. She is doing amazing. She doesn't have any pain from the procedure, but her back hurts from lying flat. That we can handle! When the doctor came to talk to us after her procedure he said, "oh, by the way, Kasi says 'Hi'." Too funny! She was already awake ready to go.
It is time to tend to her once again, I just wanted to tell all the praises of the day!
Thank you for taking time to pray!

Sunday Nov. 28

2010-11-28T13:59:00.000-05:00

Here I am watching Dirty Jobs with Kasi, Ron, and Aubree. Sitting chilling out as if we were home, but missing the boys like CRAZY! Ben was going to come up here today, but he has a little cold and Nathan was going to Grandpa and Grandma DeRoo's and that was a better offer all of a sudden. He doesn't really like the long ride up here, although he loves to see Kasi. It was a good choice for him to stay though since he has a little cold.
Kasi is hanging out with her numbers not going to the point in which she can eat, but lower than they were. She will be able to start clear liquids when they are under 100, and they are currently at 123 and 105. Last week at this time they were at 165 and 154, so she is making progress. The doctors really feel that by Wednesday she will be able to have some clear liquids. Kasi is thinking she will be able to go home NEXT week sometime, I am still hopeful for this coming weekend. She might be a little more realistic than I am right now, but I am hopeful. I have so much Christmas shopping to do and it is only going to be done a little bit at a time because I am not going to be able to leave her for long periods of time. Yes, there will be people there, but there are somethings that only a mom can do for a 14 year old girl.
Tomorrow she will be having her angiogram. They will be giving her more fluids tonight to protect her kidneys for tomorrow. This also causes her to "go" more often all night and tomorrow. Well, tomorrow she will have to remain flat for 6-8 hours so that makes it hard for her because she will need a lot of help because she will remain in bed. Once more something she has to be subject to that would make a lot of people uncomfortable. Kasi, well, she is used to these things and I am too now, so I will take care of ALL her needs. I wouldn't have it any other way though. The sense of compassion I have has grown while being up here, knowing some of these kiddos don't have moms or loving people to help take care of their every need like that. I would do it 100 times over. In fact being here this long makes me want to volunteer at DeVos, but in my spare time of course.
The angiogram will answer a lot of questions for the doctors and we are very excited to see what her aorta actually looks like now after surgery. Plus they are going to get a good look at blood flow to her belly and kidneys too. All stuff we are so curious to see how it is moving. They will also being doing a study on her for a while too. Imagine that. She is so different then other cases, even the way the test results on her, they are opposite of what they "normally" are. So, they are going to use her case to learn and research once again. It is pretty cool to know that she is not going through all of this for no reason. It will help others in the future.
So, today we rest, and wait for numbers. Tomorrow she will be put under again, and have a procedure. Our week will be looking up from then. We have been waiting for this angio to happen, so we are happy it is finally here.

Friday...day 23

2010-11-26T21:24:00.000-05:00

I can hardly imagine that today is the 23rd night spent here at U of M. Yesterday, was an amazing evening for me just to be with all of the kiddos, and for the first time in a while feel the blessing of being a mom of 4. I always feel blessed to be the mom of four, but yesterday being together for the first time in 3 weeks was a great reminder of the incredible family God has brought together. Perfectly according to His plan. Each child so unique and special it was overwhelming for me just to love on each of them. Kasi and I both felt a little sad as they walked away and for the first time I saw tears in Kasi's eyes, and it was just because she wanted to go home and be all together again. We know that will be soon and we know that God is not a God of time, we are thankful for each moment we do have.
Today the day after Thanksgiving we found ourselves giving thanks again. Kasi's numbers went down quite a bit and we are sooo thankful. She has still been struggling with her belly working properly, but if her numbers go down like they did today, she will be able to start some clear sips tomorrow. This is a huge step and will take patience again because once she has sips they will keep an eye on her levels to see what they do. If they keep going down and get to normal levels, we will be able to move on to all clears and then full liquid. If all goes well with that, full "normal" diet. This process will take days, just keep that in mind, and it has not started, but it is the way things will go if they could go perfectly. Also, Kasi will be having an angiogram on Monday IF she can get on clears by Sunday. After her angiogram she will be finishing up her recovery from a slow tummy and she will only be able to go when she is off TPN and her PICC line is out. Yes, some people go home with those, but because of risk of infection and the fact that infection would settle into her patch it is something that is not an option to go home on. We totally agree with this choice, we want her to go home completely free from all this "stuff" of the hospital.
Kasi and I have been visited by awesome friends up here and today was no different. We are blessed with people who love us and challenge us. I am reminded daily how incredible God's strength is in Kasi. So many times I talk about how strong Kasi is, but even she would say that it is God's strength in her. I have heard a lot in my life that God will never give you more that you can handle, but really I find more peace and joy in the fact that God's Grace is sufficient for us. His strength is made perfect in our weakness. It is not about the strength that we might some how have, it is all about who God is to us in the middle of the storm. We know that He fights for us all we need to do is be still. Trust. Believe. Show others the strength of God in us which is because of His love for us. It all comes back to that, His love poured out for us, His Spirit in us, and us fully and completely relying on Him.
We are doing good up here. I don't know if I can stress that enough. People are remarking about our smiles and the joy that we have. I know God's purpose was for us to be here. We have met so many people and the doctors are starting to remark to Kasi about how remarkable she is. One doctor even told Dr. Stanley in front of Kasi how incredible her attitude is and has been. Even they can see a difference. We have more opportunities to tell them that our difference is because of God! They are seeing it which is a great thing to hear and know, God will open that door for us to say something as well.
God is good!!
Thank you for all of your faithful prayers and being before the throne of our Father saying our names. We are so blessed!

Thanksgiving eve....

2010-11-24T21:14:00.000-05:00

There are many ways to look at tomorrow. A person could be upset that we are in a hospital and not home yet. We could be pouting about God not answering our prayers the way we would like. OR we can be up here, share the Joy in the fact that Kasi is alive, well, and feeling okay. We can be on purpose in our walks tomorrow sharing the joy that we have with those who are feeling a little down for being here on Thanksgiving. We can love on our whole family, together, even if it is up here in the hospital. We still have our whole family together. We can simply celebrate life!! The fact that the boys birth mom blessed us by choosing life for Ben and Nathan, for a life like Aubree's who blesses us with her humor and amazing heart, and for the continued life of Kasi, who just survived a huge surgery in which she had to fight to live, breathe, and well still fighting to eat. We know that Thanksgiving is more than the food on the table, it is about being together. And home, well, my home it is coming to me tomorrow and everyone will be together. Once again I say to all of you, hug and kiss all of your kids. Show them all the love the Father has blessed us with to GIVE! Yes, to give. Part of His free gift to us and the most important part of life. God's Love.
Be blessed on this Thanksgiving!

Kutless - Everything I Need

2010-11-23T21:33:00.000-05:00

Day 20

2010-11-23T21:21:00.000-05:00

I can hardly believe that 20 days ago we were admitted into U of M and now here we are looking at 20 days of nothing to eat. You know what even amazes me more is the fact that Kasi is pretty strong and doing really well considering everything going on inside of her. She can only have morphine which is a strong drug, yes, but I have heard that most people have more than that when they have pancreatitus. I know that numbers are subject to size of the person and her numbers are not super high, but they did go up over the past 24 hours too. As long as she is on her meds she is walking around and doing what she can. Most of her day though she in bed trying to get comfy. She is about 96 lbs now and that is tiny for her. I am waiting for her to start going up instead of down, but the doctors said that it might not happen until she eats for real. I am trying to piece all of this together, mostly because there is nothing else to do all day, and you know I know more about pancreatitus than I ever cared to. The biggest thing I do know is that what they say online, is not true to every situation. Online it says it usually lasts for 3-7 days. Well, that is not really true. It is subject to what it is a result of. In Kasi's case it is because of trauma. So, we will wait, and she will have tests, and we will wait some more. We are praying though that this does get better by next week so she can have her angiogram then. Home will be right around the corner if that happens.
I would say that is what we need up here, but that is not all. We need prayers for safety in travel for our family who is coming up on Thursday. Patience for Nathan and Ben. Peace as they will have to return home and I will have to stay here. And then, to put everything in perspective, there are 3 families that I know of now, that are facing their newborn baby's first major heart surgeries in the next day or two. They were flown here over the past few days and now are in the beginning process of a long journey, as we know. My prayer is for them to seek God through it all. Everyone up here needs prayers, we are having random people stop in our room now and it is great to hear their stories. There is one little baby girl a couple of doors down that cries and cries, and I just want to take her and snuggle her all night long. There was a little boy about 3 in a crib with no one in the room just crying and complaining. Kasi and I went for our walk yesterday and played a little peek-a-boo with him through the window just for a smile. He was in isolation so we couldn't do more...bummer. These are the things we need to remember and pray for this Thanksgiving. And make sure you look at all of your kids and are extremely thankful for every breath that they take.
Thank you Lord for loving us so much that you have spared us, saved us, and fill us so with so much joy, peace, love, and faith that nothing can move us. Praise Him!!

a better day....

2010-11-22T20:35:00.000-05:00

Today was a better day than yesterday! It is so good to report that because yesterday Kasi just felt yuck. I wouldn't say that today is one of the best days she had, but it was better than yesterday. Kasi's hemoglobin remains low so she is pale and tired. She even noticed her coloring was "off". Also, she is noticing that she is getting kind of bony. I am not sure what she weighs today, but she doesn't have much to give anymore.
We talked with the surgeon today, and Kasi always loves to hear from him, NOT. (she actually really likes him) He is a great guy and very personable, but also very real when talking about what happened in the OR. Kasi just said to him, "that's gross". For me, very interesting as long as I don't put it with Kasi's body. Sometimes I am able to do that, and at other times it hits me what she actually has gone through. For your information and to put it very lightly, they basically had everything inside her body, out. Not quite everything, but close. Her lungs of course stayed in but they deflated the left lung, and the rest we won't talk about. It is no surprise though that she has pancreatitus after talking to him. Today he said he had to kind of fold it in half, at that point Kasi covered her face, and then he said to her, "what, it's kind of like a filet of fish and I had it folded in half". We were laughing at Kasi, but when he left, Kasi said I will never look at fish the same.
All of this to say we once again are going to wait on her angiogram, which was supposed to happen tomorrow, much to our surprise and now we are looking at sometime next week. Her pancreas levels are too high yet to start food, but as soon as they drop below 100 we will start sips again. If they go up, we stop and try again in a couple of days. This will continue until we have success! As of right now, nothing and nothing for a while. Unless her levels drop suddenly, we will have patience in this process. Kasi is doing amazing with the thought of no food for a while yet. She doesn't like it, but she really doesn't like the pain and nausea that she feels. It is over whelming at times and she just curls up in a ball on her bed and trys to sleep. She does get some relief through meds, but not always. That is why she will not push the issue of food. She knows that it would hurt like crazy if her belly wasn't ready and she started eating.
I know a lot of you read this and think it must be awful. I want to tell you that God's grace is so big that we continue to smile up here and know that this is only for a time. We know that we are here for a reason and we will rejoice in our journey because we know God is right here with us. His glory was not left in the PICU, it is here among us now too. He is working in her and around her. We have had good talks and have shared bits of faith with lots of people. God is good and I have shared that with many people, and the story continues up here. New babies are coming in all the time with Congenital Heart Disease, something we have been a part of for a very long time. It is all new to families and it is a hard reality to sink into, with no choice. The choice comes with how we handle life's challenges, here in this room, we take one day at a time. We know that God grace is sufficient and His mercy is new every morning.
He will NEVER leave us.....

Sunday a day of rest

2010-11-21T20:43:00.000-05:00

Today was exactly that, a day of rest. It was a long day for Kasi only because she really didn't feel good all day. I really can't say she was in a lot of pain, but she was in pain at times, and then nauseated. It was all around a bla day. She was on meds for all of the above, and they helped, but they also made her tired. She was/is low on fluids so they are giving her more IV fluids and her blood pressure dropped today to 90/50. They really want her BP to stay between 100 - 130 on top. It was a little on the low side and that is why she is getting some extra fluid. She is being cycled down on her TPN too. That doesn't mean she will be getting less, it just means that they will make it more "full" and she will have it run in over 18 hours instead of 24. This is a great thing because hopefully we will be able to get our pass on Thanksgiving. She will need to have a better day than today though and that is something we are praying for. The levels that they check for her pancreas have gone up instead of down in the last 24 hours and that is most-likely the cause of her not feeling so well today.
Kasi's attitude has always been good through this whole thing, but she seems a little "done" today and I can't blame her. She needs strength physically and she is not getting that through her TPN. I believe the doctors are going to be adding things to her TPN to help with her tummy and to help her maintain her weight. I am going to love watching her eat her first real meal, I might actually cry. Seriously, she is getting so skinny I told the doctors I was concerned about it and you know they did agree. We will see what they can do for her. It is day 17 with nothing to eat. I feel awful for her. It will be a big step for her when it is actually time to eat.
Pray that all goes well this week and we don't have anymore set backs. I really miss the family being together. I also really need to have Nathan in my arms again. It is so hard being away from them all, but he needs me the most! Well, Ben too, but he understands more and we can Skype. It will be a long process yet, but hopefully on the last leg of the journey up here. Today was a down day, but tomorrow is a new day. And you know what, I will rejoice and be glad in it. I know that every day is a gift from God and that gives all the reason to smile.

a productive Saturday

2010-11-20T21:41:00.000-05:00

It is hard to believe it is Saturday today. It doesn't seem possible that tomorrow starts another week, and this week being the week of Thanksgiving. We have so much to be thankful for and I am reminded of that daily. Some would think that in the hospital you are reminded of all the suffering and sadness, but I can say it is also a place of Hope. We have shared smiles and joy with so many, and I am thankful for that. For people being able to come into a room and be cheered up instead of the down side of being here. Kasi and I usually have people laughing or at least smiling when they leave which is a gift for them. And believe me we are being filled with laughter too by some people who work here and share their gift with us. And example of the joy Kasi shares, she was taken on a stretcher to have a ultrasound of her kidneys and on the way back the transport guy said to her, "if you keep that smile on your face you know it will stay that way" as he smiled and laughed down the hall. He noticed that it was already stuck. Kasi smiles at everyone as they come into the room. It is great to see.
We learned a little bit about what is going on inside her today. Her surgeon came down to talk to us and he thinks they have everything figured out now about why she can't eat. They put her on NPO because it is looking like her pancreas is inflamed. It is also called pancreatitus. The way that they treat this is no food or drink and they are adding fluids through her IV to try and flush this out. One thing we also learned it that it takes a long time to get over. We are already 2 weeks into this, but it sometimes takes a month to heal and that is with the "normal" surgery like she didn't have. Yep, I said didn't have, Kasi's surgery was of course more extensive than that "normal" so we are not sure how long with will take. We do know that she is getting her minimal substance through her TPN to keep her healthy, but not to get her healthy. She is low on her hemoglobin which causes her to be really tired fast. That will not improve until she gets to eating real foods.
Our outlook looks like this. I is not probable that we get out of here by Thanksgiving. I am hoping we are able to get a 4 hour pass and get out of here for a bit. If that is the case, I am thinking we will invite ourselves to my cousins house for Thanksgiving....Thank you Ryan and Melissa!
We are in the waiting mode with this whole thing. We ask for prayers for her pancreas to heal and for the time to fly by. I also ask that you pray for our whole family as this is becoming a long time away from each other. We are a family that loves to be with each other and this is super hard to be apart.
Kasi's spirit's are up, in fact she told me this isn't the worst thing in the world. That is very true. She also said to me that she is just really happy that her surgery went so well and if this is all she has to deal with, that is okay. Once again, amazed by her. If some of you were to see her you would notice that she has lost weight and is very pale, but she wears that smile which for me is the biggest blessing ever. She could be so mad, sad, and frustrated, but she isn't any of those things. Her doctor even said to her, he wouldn't be taking this as good as she is.
We know that God's plan is perfect and the joy that He is giving us up here that we can share with others is a miracle. Seriously, Kasi's attitude and laughter is contagious. We were also informed that there are a couple of babies that were born with a heart defect and having surgery here soon. We have not seen them yet, but we are looking and watching to be able to maybe encourage them as they begin their journey in this life as a heart family. Life has changed and has many ups and downs, but knowing who is in control gives us strength for our tomorrows and peace for today.
Thank you for faithfully reading these posts, it means so much to know that you are praying and seeking our Father, mentioning Kasi's name before His throne. She is a strong young woman, who currently is in a lot of pain. So, I am going to tuck her in, pray with her and go to sleep for the night!
Be Blessed!

another day

2010-11-19T20:23:00.000-05:00

November 19. Seriously, this is the day I had in my head to be home. In fact I put on our "plan of care" spot on the board that I wanted to be home by Thanksgiving. Well, here we are and I am sad to say at this point it seems pretty impossible to be home by Thanksgiving. Kasi's tummy just doesn't seem to want to work. She is trying and doing everything she can, but it is just not working. The doctors are going to give her until Monday to try and start slowly eating something, but if she is not eating enough by Monday they will do an upper GI to check her belly and it's function. This is what Kasi said to me. Mom put it out every where that my stomach needs to start to work. Have everyone pray and pray for my stomach.
Her attitude is still great. She is being funny, laughing and making others laugh. Everyone now knows when she doesn't feel good because she doesn't wear that smile. She will smile, but she doesn't have it on her whole face. Seems crazy I know, but for those who know her really well totally understand that.
I apologize for such a short update this time, everything seems so up in the air right now. I will update more tomorrow when I get some more information on where her tummy is at and her other organs.
Right now, we are praying for her belly!!

We just keep fight the good fight, sharing a light and smile with all those we can around here. We have met "friends" up here. Imagine that, and we have nurses hanging out in our room too. It is pretty funny!

a good day??

2010-11-18T21:48:00.000-05:00

Here we are at the end of another day at U of M. I really am starting to feel them all blend in. Today started out with Kasi really having great news and being able to get her tube out of her nose. This was/is awesome for her. It feels so much better with that thing out. She was also given the freedom to actually have something in her mouth and swallow for the first time. She was told she could go on a clear liquid diet too! We were so excited, and at the same time Kasi was very nervous. She has a few bites of jello and then she had a drink of sprite. She started out with apple juice, but after a bit that didn't taste good anymore. Kasi did really great with eating only a very small amount and eating really slowly. She also started to feel "funny" after her little lunch. About 3 tablespoons full (both drink and jello) over a 1/2 hour. We put her lunch away for her thinking she might be wanting something later. Well, dinner time came and she felt a little yucky and we thought maybe she was just feeling hungry. She tried a sip or two of broth and had a couple of bites of jello thinking that would help her tummy feel better. She paced herself again and this time her belly told her to stop. About 5 minutes after she started, she ended up seeing all of her food again. From the whole day, not just the few bites this evening. I feel so bad for her, she started to cry and asked "do I have to have the tube put back in?" This is her biggest fear right now. It was so great to have it out that she is really feeling better with it out, but getting that back in would devastate her. I am thinking it will just be a process and that tomorrow we will do things even slower. I am not sure what slower looks like, but we will find away. Now, she has a belly pain which she just can't seem to kick. The morphine has been started for the pain and hopefully she will be able to have a restful night. Beside still getting woke up at 1:00 and 5:00 for breathing treatments and her bathroom trips.
As for the white blood cells. They were a little higher again today. We are not totally sure what is going on with that because they have her on 3 antibiotics to cover anything she might have. It seems to not be working because they are still high. It was explained to us by one doctor today that these white blood cells might just be "late for the fight". He said that when her body called for them to kick in a fight they were not ready so now when they are ready they showed up and the fight is over. I am not sure what the vascular team will say about his thought on this, but if they are okay with his thought process maybe they will do her angiogram before they are at normal numbers. We will see, I am not sure how communication works up here yet. I am not sure if I will ever totally understand all of that. We are a unique case and how they all communicate on her case is kind of confusing. I will know more in the morning.
The lung issue seems to be getting better. They didn't do a chest Xray today, but they listen to her and are amazed at how good she sounds now. This is a great feeling for her! She smiles every time they mention it.
Here is our goal, we would really like to be home for Thanksgiving. I know it seems crazy to think we could be here in a week yet, but as slow as things move it would be a GREAT thing to accomplish. We are praying for her to have her angiogram the beginning of next week. Like Monday or Tuesday, so we could have our day of recovery and come home. If you could join us in that prayer that would be awesome!
We know that God's timing is perfect though and if there is one more person we need to share the light with, then we will be faithful with that too. But hopefully we are at the end of our journey here and can move it back home.
When I asked Kasi just now how she felt about the whole day, she said, "it was a good day". So, even though her belly isn't tolerating food yet, she still feels like she is having a good day and that is what matters.

Wednesday...two weeks later.

2010-11-17T21:22:00.000-05:00

Here we are two weeks after we have been admitted. What a long haul and at the same time with everything that has happened in the last two weeks it has flown. It is because my brain is still in this "Kasi is recovering from surgery" place. Every night we wake up many times and that makes the nights kind of blend into the days.
Tonight we skyped home and that was hard for me to see the kiddos and my arms ached a little to hold Nathan again. He needs his mommy, but he is in good hands with my mom and dad. It was good to hear all of their school stories and stuff of life. We are a family that is used to sitting down at the end of the day around a dinner table and share what has happened in that day. I am really missing that. All of the goofy stuff of Ben and all of the serious conversations with Aubree. Ok, the not so serious ones too because she is a funny funny girl! At the same time, Kasi and I are really bonding again up here. Not that we have ever been "not bonded" but we have a different relationship than most 14 year olds and their moms. We still get into little battles, but really we appreciate each other, and I don't think that usually happens until kids are much older. I am blessed to have that now.
Kasi had a really good day today and I want to put her requests on here as well as her devotional verse for today. These are the first things that she has lead with emotionally up here so I believe it is important to her heart so I will share.
First, her request is for her lung to start inflating. She is going through some vigorous RT to open this up. It is okay, but it does hurt her incision and her back. It is for a good cause, because it is super important that her lung re inflates of course! Also, for this tube to come out of her nose. It goes to her belly and tomorrow will be day 14 without food or drink. She is kind of sick of it, but she never complains. She is nervous about getting it out because of the risk of her belly not being ready and then having to have it put back in. She has heard that it wasn't pleasant for that to happen. Since she has been struggling with this for so long, she is worried that her belly won't be ready. Please pray that when it comes out it stays out. I really believe that everything is ready, but Kasi has to believe that too.
Now for Kasi's devotional for today. She showed me tonight what it was because it was very meaningful for her. I love this!!

Isaiah 25:1
O Lord, you are my God; I will exalt you and praise your name, for in perfect faithfulness you have done marvelous things, things planned long ago.
Kasi once again can see and knows God faithfulness to her. She knows He has done marvelous things, that is why she has peace. She is God's child, of course He will care for her.

Now to the "stuff" of being up here. Kasi's left lung is still diminished and her lower lung still down. She is working hard on it. Her white count still up, but lower than yesterday. She found out today that she is allergic to a med she was on and she was getting hot flashes and flushes. They discontinued that. When I start posting about an angiogram, that is when we are getting to the home stretch. She has to have her lung up, white count down, and tube out before they think about doing one. We have to have an angiogram before we go home. We are hoping we are home before Thanksgiving!

this is the air i breathe by hillsongs with lyrics

2010-11-16T15:37:00.000-05:00

the day after.....all the prayers go up!

2010-11-16T15:33:00.000-05:00

I am really excited to write this update because everything we were "worried about" and praying about we have results on. First, her lung seems to be okay. She is not in any pain and last night every time the respiratory therapist would come into the room she would look at her sats, listen, and see that Kasi was doing fine. She wasn't on any oxygen either. It was such a good thing because she choose not to wake Kasi up then either. YAY! This morning they checked her white count and it was still up so they did do a procedure to pull some of the fluid out of her pelvis. This fluid showed no signs of infection which is great news, they are going to do a culture on the fluid to see if it grows anything though. Really, it is great news that nothing showed up.
Here is my take on the last few hours. Okay, I know it has been long than a "few" hours, but we are on hospital time remember. Everything blends into each other.
Kasi was brought before our God with these major issues that were hitting us right in the face. People started praying and God gave us this verse Exodus 14:14 "The Lord will fight for you, you only need to be still". This was given through a couple of means. First I follow a blog called Bowensheart and that was posted as a comment on his wall and it struck me and I have been thinking on that for a bit. Along with that someone asked me about suffering as they watch their dad suffer with cancer and as I reflected on that as I have in the past Be Still and know that I am God came to mind. These two things I have been thinking and praying on. Well, last night in the middle of my heart getting a little anxious a friend texted me Ex. 14:14. "The Lord will fight for you; you need only to be still". Then came that peace that passes all understanding. I don't need to fight, I have a bunch of pray warriors out there fighting for Kasi, pleading before the throne, we need to be still and you know as I am being still, I am knowing that He is God. There is nothing and no one bigger or greater. God, the creator of all things says to me, Be still and know that I AM GOD.
So, last night as I tucked her in bed I prayed over her a new prayer, that the very breath of God that fills our very being and that created us from dust breath into her lung air, God's air. Also, prayed that the fighting going on inside her body be taken under control by the only One who is in her, around her, before her, and beside her. Then I kissed her good-night and we slept. The RT came in and checked on her and what we thought was going to be a long night because of working with her turned out to be a night in which she decided to not do a thing. She sounded clear, and her O2 level was up. This was the first time since we have been here that her O2 level has stayed up all night without going on oxygen. Praise the Lord! Of course that added joy to my day. Kasi feels great after a good rest last night.
About this fluid in her pelvis. I am picturing a bunch of God's little workers, working and warring it inside Kasi's body. This too gives me peace because, He is GOD. There is no one else beside Him. I will wait to see what the "official" results are when the doctors come down here and talk to us. In the last hour she has been taken off suction and now put back on. I am not sure they even know what to do with everything that is going on. Her surgeon came down and said, you are supposed to be home right now. We just smile, and wish we were. It is God's timing though and He is the victor in all of this. We will continue to praise Him with every part of our being. And thank Him for every breath we take.
Thank you for praying.....God has heard you and has answered! Take time to do a "happy dance" before our God! He is an awesome God and He sure reigns!
I will end with this, put the emphasis on the word in CAPS,
Be still and KNOW that I am God
BE STILL and know that I am God
Be still and know that I AM GOD.......
God's peace to you!

BIG prayer request

2010-11-15T21:46:00.000-05:00

I must say, this is going to be a short update but one of the biggest prayer requests since surgery.
Kasi's left lung lower lobe has collapsed and she will be working on that all night to get it back up. This is going to be a hard process for her but the reason it is so hard is that she has a lot of fluid in her pelvis. They have been watching her blood count and it has gone up again today so they did a CT scan and found all of this out. She is a strong, strong girl and has fought so much already, she needs to put on her God strong armor and keep herself safe and protected and FREE!
I believe her blood count has gone up again since this morning, so we will be having a draw of fluid out of her pelvis tonight and that will get processed to see if bacteria grows. We need to pray against bacteria growing! If it does show up, all the doctor said tonight is that we would be having a serious talk. That in itself tells us a lot. We don't want to have that talk.
As I was reminded in a comment today, The Lord our God goes with us where ever we go. I also know He is the Great Physician! It is really hard to watch Kasi go through this, BUT, she not only amazes me, but she is amazing all the doctors and nurses here with her strength. Sometimes though, she is so strong they think she is doing great when really she is fighting her body and what she feels. Crazy girl! She is doing her best and so am I! Ron is up here now and we will surround her with our love and support the best we can. And you know she can feel that. Like she said today, I like watching a movie with my mom and my dad, as we both sat by her one on each side. We love this child that God has given us with all of our heart. Her physical pain and her suffering is like someone taking my heart out of my chest and crushing it. My tears flow tonight with all of this. Even through them we know, it will be okay. Kasi even said, it will be okay. Sometimes I wonder who is strong for who, then I realize God is strong for us both.
If I haven't said this before....please be fervently praying for Kasi. I know you all have already, this is something big. I want to tackle it offensively.....
May her pelvis be cleared in Jesus name and may NO bacteria live inside of Kasi! She is God's daughter and only HE can love her more...

A long Sunday

2010-11-14T19:50:00.000-05:00

Here it is our second Sunday at U of M. It seems like last week was so far away and at the same time all the days blend together. Today for Kasi and I started at midnight. Kasi was given meds to help her tummy decide to work. I must say, they kicked in a lot of stuff in her. I am happy to report, she did pass that gas! I have never seen such an excited face as the one I saw at 4:00 am. Kasi was so happy, she just looked at me and said,"I farted". We both wanted to do a happy dance. I know it seems so hard to understand and you might even think it sounds funny, but it is so real. It is a sign of her belly really working the correct way. We were both so happy, but it was a long night of her tummy working over time. When morning broke I even took a little nap in the room while my mom and dad took care of her here. My dad was happy to even be able to snuggle her too. Kasi was just as happy about that too.
Kasi has said some amazing things to me today, and I have to say I am so blessed to have her. The things every mom wants and even longs to hear, my sweet baby girl has said to me. She thanks me for taking such good care of her, and for loving her so much. I am the one who is blessed that is for sure. Now once again the nurses on this floor are the ones saying how much they love Kasi and they are starting to "fight" over taking care of her. Let me tell you she is not easy to take care of either, but her personality and grace makes them want to. It is a desire not a "have to".
Today, during the day hours, were full of family and friends. It was great to see Ben and Aubree up here although very hard to see them go and sink myself back into reality of being here. I know it has not been a super long time, I have been down that road, but home still seems so far off. Kasi is ready too, she just wants to smell home. Which she did today when Aubree took something from home to her. She is loving it.
Medically Kasi has had a good day. They took her PCA away, that is her pain pump, and they are giving her morphine every 4 hours as needed. This was Kasi's choice actually. She has had two doses of it today and her pain is extreme when she has it. She also was able to take sips of water today. That started with a cup of water with ice in it and then the nurse came in for her to take her aspirin by mouth with about two swallows in a cup. She was so excited to actually swallow something. They took her NG off suction and put it to drain in a bag. This was going great for most of the day until this evening when Kasi got really sick. She threw up a ton of the fluid that usually drains from her tube and a ton of it went into the bag. So, after that we figured out that her tummy still is not ready for anything. Tomorrow is another day, and we will try with ice chips tomorrow for a while and see what happens from there. I am asking for prayers for Kasi to be able to get water. She had those few ounces today and she loved it! She was so excited, but at the end of the day when her tummy rejected it, she felt defeated. And that is when her pain hit her too. She is caring a lot of water on her back and her chest and belly are starting to hurt with out the continuous morphine. Kasi is a very strong young girl and she handles all of this with a strength that I can't explain. That is what people see. In fact people come into our room and they can't believe that she is 14, they see her and think she is 18. She is wearing herself with maturity. God is giving her peace and she needs peace, especially at times when she doesn't understand.
I should also tell you that her while blood count was up again today so we are starting all over again with cultures, urine tests, and she had a chest X-ray. The problem is, doctors order it, but they don't tell us anything on a Sunday. It will be interesting in the morning when we talk to them again.
Here is my request, we knew this was going to be a long road, and that is the road we are on. We are trying to be patient, but at the same time we just want to go home. So, my prayer is this, pray that Kasi's body heals with a speedy recovery. Help us to be "smart" not to rush things, but to rely on the doctors and nurses in taking care of her. Help them to be the ones to see her healing quickly!
We are blessed beyond the curse and His promise will endure!!! We will rest in the fact that not only will God do something, He already is.....

A good day...phew

2010-11-13T21:53:00.000-05:00

So excited to report that today was such a good day. I want you all to know that we are being so well taken care of and last night after a crazy "not so good" day, today ends with a smile. God is so good, all of the things I pray for are here and now. Peace, Joy, His presence, His healing, His love! All of those things we can never be separated from are right here right now for our taking and today, we took another piece of Jesus. I was able to gain another little boy to pray for up here. He comes from a "rough" place and his sister and I had the opportunity to talk and I told her I would pray for her 10 year old brother. I also saw Bowen's mom today with a BIG smile on her face. A reflection of God at work that is for sure. Having Joy in the journey and showing God's love is key.
Kasi got her PICC line in today. It went very smoothly, Kasi did great! Me, well, not so good. I have really low blood pressure and with a mask on and listening to them talk I almost passed out, twice! I knew the symptoms so I left the room and left Kasi's side which was awful. But I came back to see her with a little smile on her face, she knows me so well. Today when asked what she needs, she said, I just need my mom. That is the type of day we have had. Full of love for each other, talks about God's goodness, and people to pray for and things to rejoice.
As I tuck her in tonight we will talk about who God is, but we will reflect on who He has been so far in our journey up here at U of M. I love this child of His who I can talk about this stuff with.
Praising God from whom ALL blessings flow!
Jodi
Also excited to see my little Ben and see Aubree tomorrow. My heart is full! Still missing my little Nathan....

Before The Morning - Josh Wilson - Worship Video w-lyrics

2010-11-12T22:44:00.000-05:00

Friday...day 10

2010-11-12T21:21:00.000-05:00

So, last week Wednesday we were admitted, Thursday surgery, and here we are on Friday 10 days later. It is hard for me to believe where we are at and what today has brought.
After last night and the excitement of actually feeling like we were making progress and getting this tube out, well, we found out that it was not as good as we thought. It was crazy, but because of Kasi's NG tube putting out so much "stuff" from her tummy they know that her stomach is NOT working yet. Everything from last night was because of her antibiotics that she is on. We were kind of sad about that this morning, but then when Kasi started throwing up, or should I say, dry heaving, it became overwhelming. This NG tube is supposed to keep her from feeling sick, but she is still feeling sick. It could be from her morphine, but she is on a low dose and it gets less and less everyday. She started to walk and now it seems like it is harder to walk because I have to unplug her NG tube and as soon as I take it off suction it seems to cause her tummy to be upset. We still suffer through it, but it is getting really hard for Kasi. I am so proud of her!! I look at her and she is completely pale, sunk in eyes, with water weight hanging around on her in weird places. But she plugs away at each day forcing herself to get up, walk, sit up all while feeling like puking with a nasty tube down her nose and an IV pole full of pumps going into her.
We found out that this could be her life for a week or weeks. The reason why is because her bowels were manipulated so much in surgery and cut off from all blood flow for such a long time that they are stunned. They might be this way for weeks. We will have an angiogram on Tuesday and they will look at all of her vascular blood flow and her repair. We are praying that her body heals and that we can endure with grace. Kasi and I have had a talk today about what this might look like for us for a time. She understood and knows that we can't change something we are in the middle of, and we have no way to do so, even if we wanted to. So it is a matter of attitude of each day. Excepting what is and having patience to plug away and heal. We will continue to pray for healing of her belly and for gas to pass. We will continue to rejoice that her feet are pink and warm. We know that reflects her whole body getting the blood it needs now to survive. We will pray against infection in every part of her body. Tomorrow she gets a PICC line added. This has risk, risk of infection and Kasi's veins and vessels are extremely hard to get into. So, tonight we pray that her veins and vessels open up to what they need and keep out everything that would not be good. She is loved by many, but loved so much by our Father. I look at her right now and it is as if she is curled up in His arms resting. He holds her, even if I can't. Although she has burrowed into me as best she can a few times through out the day. She tries to get as close as she can and I have spent many hours rubbing her back, legs, head, and hands. I look at her in her quiet moments with tears running down my face. I am so full of pride for her, and hurt for her as well. I am proud of how strong she is, and I hurt for her because of all this that she has to go through. I am the one who does the "it isn't fair", but she NEVER has.
I think that sums up my requests, praises, and updates on this beautiful child of God. I am privileged to be her mom, and honored to take care of her. Pray for me to keep up my strength, like I have said before, we are God strong! We know that everything will be okay. It will, because no one or nothing can separate us from our Father's love. And that.....is enough.
Love to all!

we are moved!

2010-11-11T21:32:00.000-05:00

Well, here we are on the floor and out of the PICU. I am glad that we don't have the ICU status anymore, but the care we now get is a little less. Okay a lot less. Kasi still have a lot of meds that are getting pushed through her IV's and she still can't eat. She has her NG tube which was not being nice to her at all today and they have had to flush it many many times. She did pass some gas!!!! Yes very happy to report that, and she is in more pain because of it. Kasi has decided to not push her pain button because morphine could slow her belly down. She has pushed it now and is sleeping, she is exhausted.
Tomorrow it is all up to me to get her going for a walk, or two. I have taken her to the bathroom and to do that I have to unhook everything and let me tell you I am getting pretty good with an NG tube now. I know how they thing works and how to hook it all up. My biggest thing is keeping everything untangled. I am getting much better at that. I told Kasi that tomorrow we will look at how I will have to give her a "bath" here on the floor.
Kasi also has a lot of fluid on her still. I can see it in her back and tummy. It actually bulges in places and we kind of laugh at it. She is still draining out of her chest tube "hole". That too is kind of funny because she is draining so much that they, we, me, would have to change her so many times that she was getting funny skin because of the tape. So, last night in the PICU they crazy night nurses, well, they put a poop bag on her side. Let me tell you, it is perfect!!! Now we just drain the bag =) It sounds funny, but it looks as if that is what it was made for. As for her fever, she seems to be done with it for the most part. She does get "warm" but no real fever today. Her cultures are negative right now and that is great news. I am pretty sure that they will remain that way. Her white count is getting back down to normal too. They put her on antibiotics right away yesterday and she seems to be over that hump.
We are seeing a lot of good things and we are thankful for that. They will be doing an angiogram at the beginning of next week. Personally, I want to leave to go right after that, but we will see. This place is not DeVos in the quiet and family friendly way, but of course all of the specialist are here. I have heard more often that Dr. Stanley is the best in the world at this type of surgery so we are happy he is in MI. We will push through the rest and I will be Kasi's number one advocate!
Keep praying for healing and for her pain to go away completely. She is very weak, but stronger than most. She is getting praise from all the doctors and nurses because of how well she is doing. They are amazed at her fight against the fluid on her lungs too. It was/is amazing to see God's strength in her. We are keeping our focus and rejoicing in the victories!
This is becoming very hard on the rest of the family though. Just keep the boys in prayer! Aubree too, but she is a little older to understand. Ben was crying to me on the phone yesterday and just wants us home. Ron went home today so it is a little more "normal". That makes it hard on everyone. Peace at home is what Kasi and I pray at night, so if you can help us in that prayer we would love it. We will try to rest here again tonight.
Thank you for your faithful prayers!
God is giving strength and they are being answered. I believe she is going to do this quicker than we thought before. She is God strong!
Jodi
PS....we had a member of the softball, swimming, and football team come in our room and sign a hat for Kasi. We told the football player to win, he is John # 49. And of course the rest of the talk was softball....hehehe...she plays 1st base and I know we have watched her play. Fun! So, Aubree has a hat!

God is with us.

2010-11-10T22:13:00.000-05:00

The LORD is the everlasting God,
the Creator of the ends of the earth.
... He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
-Isaiah 40:28-29

Because when I am weak, I am strong....God strong!
Thank you for all of your prayers today. I am just going to give you a little update on the rest of our day.
It was a yo-yo day today. We have had ups and downs all day. I have been praying for many things today and I thought the fact that Kasi needs to pass gas was the biggest. Well, it turns out that was one of many things to pray for and against. I am happy to report that Kasi is resting comfortably in bed right now, in a different PICU room, still not eating, but giving me a smile once again. This says a lot about her. She has been through so much today and everyday really. She can't eat, which I have told you, but she has to walk. Today once again she spiked a little fever out of now where, but she insisted on walking anyway. She knows in order to get her tummy moving she needs to walk, and in order to walk, she can't be sleepy so that means less meds. Well, you know what happens then she gets hurting. I know they want her to keep up on her pain but there are very few meds that she can take because of her surgery. So, she is dealing and at night, starting tonight, they are going to turn up her pain meds so hopefully she can sleep through the night. I am not sure about who all God is waking up in the middle of the night, but that is for real! My pager goes crazy and it is at the exact time that we need prayers. Kasi has been waking up with awful pain and it starts at around 3:00 am and last for a couple hours. It is miserable, but last night while we were dealing with this stuff, my pager was buzzing like crazy. It amazes me that you are so faithful for the call of God to pray even then! And then to take time and call the number, well, we needed them all! The rest of the day as well. I have seen God at work here today and we will praise Him and do a little happy dance in our hearts.
We have been canceled on our angiogram for tomorrow. They are going to reschedule that sometime, I am not sure when. They thought they would do a CAT scan, but that is not an option either because they won't be able to see what they want to see because of her rods and screws. So, tomorrow is another day. We will see what her chest X-ray will show and we will see if she passes any gas. Also, we are waiting for the culture to come back on her blood work. I know you all are praying for her, and I thank you!
Have a great night! Keep praying!!
Love to you all.

an afternoon update

2010-11-10T14:36:00.000-05:00

So this is an odd time for an update I know. I just really felt that I needed to share Kasi's concerns. She is really tired right now and she won't leave me out of her sight. Thanks to skype I can be out in the waiting room eating and she can be in the room and she knows I will come right in if she needs me. And yes, there are other people here sitting with her. I am really thinking that Kasi has hit the point of being done, sick of this whole process. Her spirits are down today. Although she smiles and gets cheery when she gets cards and stuff. So, thank you for those who have sent her stuff. She wants me to read them to her right away! Makes me happy to hear all of the prayer that are being sent up and she feels the love from you when you show her in that way too. Kasi is on day number 7 with nothing in her mouth. She is getting really tired and hungry. They are watching her tummy and it seems to be NOT kicking in at this time. Tomorrow she will be having an angiogram done in which they would like to just make her sleepy instead of putting her under. They are debating that now because her tummy isn't working correctly and because of her issues with breathing and fluid. Kasi knows that no matter what she will not be able to eat after midnight tonight again because of the procedure tomorrow. She feels a little defeated. The doctors were trying to get some IV food for her, but the doctors in charge wouldn't allow it. It is because of risk of infection. The is one thing they are being extremely cautious about, which is good because an infection in her patch would be absolutely NOT good. So, we wait this food thing out.
Kasi did walk today all around the PICU which was great. I love to see that! She felt good doing it, but I think because of nothing refueling her it seems to be wiping her out. She still needs to get up because it will help her lungs, it is becoming harder instead of easier. She keeps asking, are the doctors saying I am getting better? And she is, she just has a long way to go.
I needed to update this afternoon because she needs prayers right away for this. She is struggling and so am I as her mom. I love her a ton and it is hard to watch. I also have things going on at home that I feel like I need to be there for, like Ben loosing his front tooth, but here I am. I call Aubree, but it is not the same. And then there is Nathan who is looking for me to come home every time the door opens. I guess it is one of "those" days. I am real, and this is a lot, but I know God is bigger!
"So we fix our eyes not on what is seen, but on what is unseen.* For what is seen is temporary, but what is unseen is eternal."
We are fixing our eyes on Jesus and His power to heal and restore!
God is working in her room, pray for Kasi to feel His power once again with in her!

Day 7...still in the PICU

2010-11-10T09:13:00.001-05:00

My update is going to be quick today because I am waiting for rounds with the doctors yet. I know that they are starting her on an antibiotic today because her white blood count is up to 13,000. They feel like it could be one of two things, but they are doing cultures to make sure. I will let you know what they find out, but please pray that it is NOT in her blood and that it will not effect her patch. We are praying protection over that patch of hers! She is feeling good right now, in pain still but loving her button. She looks a lot better because she does have her central line out and that is awesome!! Pray for her to have better bowel sounds. She still can not have anything by mouth for maybe another couple of days....and she is getting hungry!
I will post more later!

a new day!

2010-11-09T11:47:00.000-05:00

Wow, what a long night, but productive! Kasi's chest Xray is looking better, praise God for that one along with us. I know we bring so many petitions before our God and sometimes on here it seems I am always asking for prayers for something. I just want to say, I try to balance it, but sometimes our immediate need seems so great that it even clouds my thinking and typing. Know that I am grateful throughout the day with her progress and her strength and I have moments of sadness knowing that she is in pain and it is a long road. I just want her to be better and I have to remember that this is going to be a long recovery. I am reminded by the doctors that this is a huge surgery that she has gone through and they are pleased with her recovery. It is also one they take very seriously. They are going to be taking out her central line and foley today because the longer they are in the greater chance of infection. That is not good because they really stressed in rounds this morning how NOT GOOD that would be. She is hanging on to a "higher" temp, but not one they would call a fever. They are keeping a very close eye on that. She is currently sitting in a chair, and is starting to joke around. I love it, her humor is coming back again and even the nurse stops and asks, "what did she just say?" I would tell her and she would laugh. It is great to see that once again.
So my prayer for today are this:
Fluid off her body, pain to lessen, no infection, no fever, and strength.
Also, being up here is a such a reminder of when we went through this 14 years ago when she was a baby. I see all of the babies up here and I just want to wrap up the moms and say it is okay just cry. It is so hard to watch. We have Hope, and we have to remember that some don't know the Hope we have or the peace we have in Jesus.
Kasi and I have been following a blog of a little guy who is up here. The blog is bowensheart, and for some reason Kasi feels a little connected to Bowen in her heart. We had the opportunity to meet his mom and dad the other day up here and they were looking forward to maybe being able to go home on Monday. Well, because of "stuff" of being a heart baby and all the things that go on up here it will be a while now before he goes home. This really made Kasi sad for Bowen and we have prayed for him a lot in the last couple of days. I just want to let you all know because I know that we have over 1,000 people reading this blog and if we pool all of our prayer warriors along side his it would be even louder before the throne of God on Bowen's behalf. So every time you pray for Kasi, and my buzzer goes off, which is so encouraging to Kasi, I know that Bowen's name will be mentioned too. Matt and Sarah, his mom and dad too! God knows every detail of these little ones and right now Kasi and I are praying for Bowen to fight just as Kasi is fighting. Be God strong!!
Thank you for all of your prayers, we are on the road, together. I am blessed to be Kasi's mom and she is a gift. I see God's goodness and blessings around all of the time.
Love to you all!
Jodi

The end of a long day....again!

2010-11-08T22:52:00.000-05:00

Tonight as I look at Kasi she is finally sitting up in bed watching a little TV. I believe after a long process of figuring out that Kasi doesn't tell you when she hurts she actually just copes, they have her pain a little more under control. Kasi is extremely strong as I have said before and it most-likely is because she has been exposed to so much pain over her life and especially as a baby. Her body and brain kind of take over and she has things she does naturally to cope with the pain. As good as that could be, it is also not nice when her body is in real pain and she doesn't know how to feel it or explain it. Which can cause you not to breath deep and can cause you not to wake up. I have to say, Kasi is awake right now and is breathing pretty good. It has been a really long day though. God is good and He is working in this room. There were times today that Kasi sats were dropping in the 70's and she just couldn't breath very well. They have been turning up her O2 and now they finally have it set at 6 liters and 50%. What that all means I am not sure, but it is a lot more than before when she was on a nose thing at .5 liters. The fluid wants to take up residents in her lungs, and we are praying against that! I have prayed over her silently and together. We have had many answers to prayers and we have a buzzing going on that I love because it is giving me peace to know that people aren't forgetting to pray. This is a long process and it is looking like we will be in the PICU until Thursday. On Thursday she will have a angiogram to check her repair. She will once again be put under and have a breathing tube. Pray that her belly starts working before that, that her lungs won't be lazy, and that the fluid is GONE! In Jesus Name!
I am kind of scattered with all of my thoughts of the day and there is not really anyway to sum them all up. I found myself in the PICU pleading with the Father again as I saw Kasi not gaining. I saw her is such pain I would look out the window and say "Lord give me the strength to show her Your strength and that she CAN do this". Kasi has fought all day! She has worked through the worst pain you could probably ever feel and try to get strength from muscles that have just been cut through. She is amazing, but God's strength in her was so awesome to see today. She now feels good about her day and I am very proud of her. She has fought and now it is time for rest. A little anyway, she will still be getting up every hour and maybe even have to lay on her vibrating thing every 1/2 hour.
Keep up the praying, we love you all!
Jodi

I just asked Kasi if she wanted to tell you all something and she said, through coughs and pain....my chest! So, Please pray for her chest. This is her plea to you all!

Your Hands with Lyrics JJ Heller

2010-11-08T11:15:00.000-05:00

requests/update

2010-11-08T11:00:00.000-05:00

This morning has been full of excitement already. Starting at 6:20 of course they doctors were in here assessing how Kasi was doing after a long over night of waking up every hour. Well, what they are finding is the fact that her left lung has air on it, but now her right lung looks "fuzzy". This could be from all the fluid they gave her plus her pain not allowing her to take deep breaths to keep it off/out. So, today they are going to work on different pain management plus she will be doing even more breathing "things" to help expand her lungs. They are going to try and get her up out of bed and talking a couple of steps today. They will have to call in PT to help with this because she is hooked up to so much yet. I guess they have a system and it does work really well. Kasi's blood pressure has gone up some, but that is from taking quicker shallower breaths instead of being restful. She also has more pain in her belly and side. This is from her incision which is massive. Her incision goes from underneath her shoulder blade in her back down following her ribs to her middle front and continues straight down her belly to about 4 inches below her belly button. She has had all her tummy muscles cut and her diaphragm plus they went in between her ribs. Yep, she does have pain and rightfully so. She is doing great though with that, and just really wants to sleep. Her mask on her face does bother her some just because she has a really hard tube going into her nose to her belly because her tummy isn't working yet. Her kidneys seem to be stable right now which is great news! Until she is moving around and stuff we won't know fully what her "normal" will be.
We are praising God for all of the good things and praying to God for all of these other issues. It is amazing to watch people up here to really don't know Him and it is sad to see there great pain and anguish because of the uncertainties and unknowns. We have seen people collect in the family room only to see their child for the last time to what I am thinking to be a single mom here with her baby and her pain almost to much to bear. I know all of you are praying for Kasi and for us, and we love that and praise God for that, but being here makes life a little real to the fact people go through this daily/weekly/monthly. Yes this is our journey and we are going through it too, but with a Hope that some don't have. I praise God for claiming us, for writing our name in His book and for loving us beyond all measure. I pray that I will be able to show that love to those we see in our family waiting area of the PICU/PTCU. They are people from all over the country, with life changing events happening right now. There are tears being shed every moment of every day, some for rejoicing and some for sorrow. Please remember all the families in these moments of life.
I will update you all tonight about her progress of the day! Keep posting on her facebook wall if you are her friend! I read them to her and it gives her a smile!
Love you all!!
Jodi

Here and now!

2010-11-07T22:52:00.000-05:00

As I sit here time after time and hear the doctors tell us how great it is that Dr. Stanley did this surgery, I started to think on it all. What I was thinking is how awesome our God is in the middle of all of this. I know you have heard me explain how this surgery is one that no one else in the world has ever done before. There are no support groups, or things to look up online that will help us understand what was and is going to happen with healing. Well, something one doctor said to me today kind of really made me think about this. He said that if Kasi were to have any more surgeries on this or complications it would most likely be Dr. Aliason that would be following up on her. Why? Because Dr. Stanley is 72 and he is the best in the world, but Dr. Aliason has been training under him for years and is looking to take over when he retires. All of this to say, that if Kasi wouldn't have had this surgery done now, we wouldn't have had the experience of Dr. Stanley to do this and who knows what it would be like for her. Well, God knows, and He knew!
Back in 2008 we were wondering what her back surgery would do to her aorta. It was a very stressful time as you remember and it was going to be a long, rough, road with lots of pain. If you also remember God spared her from pain and the long rough road. She did amazing with her back surgery and rebounded so well she was back to school a month ahead of schedule. It did though make this surgery happen sooner rather than later. It caused her to grow 4.5 inches in a very short amount of time which her aorta couldn't handle. Dr. Stanley said the surgery was inevitable it was just pushed up a bit because of the quickness in which she grew. All of that to say, God is so good!!! Why? If you look at this, if Kasi wouldn't have had the back surgery to speed along this heart surgery, wouldn't we have had the man God had prepared for this surgery. No matter how we look at this, it was Gods plan for her to go through this, because His Glory is bigger through what we are seeing and experiencing than if we have not had any of this. He is being seen by many many people because of answers to prayer and by His power being shown. Kasi too is seeing Him and is feeling His power through her, and because of that people up here at U of M are seeing God's amazing Grace through a 14 year old young woman. I just thought I needed to share this because it shows God's sovereignty in and through ALL things!
Today as I look back at our little journey so far at U of M I can see the amazing people of God listening and obeying the call of being faithful. Faithful to each other and working together because of Kasi. There were no denominational boundaries or differences, just people loving God and loving Kasi. At the fundraiser there were more than 1,000 people there at some point. As overwhelming as that night was it gives me great assurance at the amount of people that are making it loud before the throne of our Father. What a gift! How awesome for Kasi and how humbling for me. This prayer buzzer going off at all times is crazy to think each represents people praying Kasi's name before the Creator of all things!
That brings me to yesterday and the challenges we faced. They were so hard to be in the middle of and to feel like I was watching from a distance. My body and mind go into help her mode and I don't even think to cry until I have a moment to release at the end of the day. Today I can look at yesterday and I almost can truly see all of the angels and them singing all around, but we didn't hear the sound. Lord, I am sooo amazed by you. Prayers answered from the time my buzzer started going off and He relieved her pain and gave her peace and joy.
Today again was a day full of pain and relief. She dealt with a severe pain in her chest/throat which was almost unbearable. Now it is less severe and she is sleeping. She has had her bath and her hair has finally been combed. I know, not a big deal, right? It is a big deal if your hair was all stuck in your tape for your central line. Not fun! She did get her chest tube out, but now they found out she has some air around her lung where the chest tube was. Her oxygen has dropped so they have put her on more O2 now to try and increase her oxygen to get this out of her. She was actually just put on 100% oxygen with a mask. They will be waking her up every hour and the hour to do her breathing too, so she will be exhausted!
Her output today is less then they would like too and her BP is starting to go up. That just means her kidneys are still trying to adjust to "real" blood pressure and they are trying to recover after no blood for a while in the OR. Her belly still doesn't have anything going on inside, so still no food. She will start receiving nourishment through her IV if she goes much longer with out eating. She is a tough girl and she is fighting. I am so happy to know that she is not fight alone, but with many people on their knees for her.
This is our journey, and it is one we do with each step taken in Faith. Our God is healer, awesome in power...OUR GOD! Yes, I could just shout it right now. I have a joy, even through these struggles and tears, knowing that the same God holds her. It was nice to see another family up here who is also experiencing God's glory all around. I praise Him for their testimony too, so others can see the work of God, love of Jesus, and comfort of the Holy Spirit.
Please continue to pray. We see a lot of doctors in here a lot of times. And well, we are doing good, we still are on one on one care because she is still not "out of the woods". But His glory is here and now!
---Jodi

Where do I start

2010-11-06T23:38:00.000-04:00

What a day!! I don't even know where to start because I feel like I have lived a whole week in one day. Kasi woke up this morning looking better than before because she lost some of the water weight that was around her face. We thought this day was going to be an awesome day! It started out smoothly, but then Kasi seemed to be a little less awake or "smart" this morning. I wasn't sure what it was until the doctors started to collect outside her door and we had a "talk". This was about the fluid that was building up around her lungs and making it hard for her to breath. Plus they didn't want these fluids to start to collect inside her lung tissue. She was told she would have to start and take deep breaths and the morphine knocks her out so that was hard to do because she was struggling to stay awake. They cut back on her morphine so she would wake up more and at the same time she would have to start doing some deep breathing things to get the phlegm out of her chest. Well, the result was awful for her. She started to cough and it is so thick because she is not able to take anything by mouth. It was extremely hard on her not to mention she couldn't breath 3 or more times and she just looked up at me with fear in her eyes mouthing "I can't breath". For me that is a moment that I will never forget. It was an awful, gut wrenching, hard thing to see and take. As a mom I wanted to just get it out, but there was nothing I could do. The pain she was going through was so much that her little body just wouldn't do it. Kasi was really tried, her body just didn't listen. She almost had tears running down her cheeks and she had an incredibly desperate face. One I don't ever need to see again. I was helpless. The nurse stepped in and suctioned her out and that made her gag. She would have her moments of peace in between, but they were not very peaceful. She was scared.
The doctors came by again a little after noon and said they really wanted her to sit in a chair. This would help the fluid around her lungs to drain or loosen up. Kasi has a central line hanging from her neck, a chest tube in her side, an artline, foley, NG tube, and oxygen all connected to her. This moving her thing was going to be a challenge and I was a little nervous about her pain. Well, it did hurt. It hurt alot! The doctors explained to Kasi how good this would be for her, so Kasi was the one who said, "Okay" and started wanting to sit up. She is amazing. The pain it caused what unimaginable, but she endured. She showed grace to all of her care givers, even when they couldn't get her central line that is connected to her neck to stay up. It was hanging, kind of from her and causing discomfort. She also wasn't able to get comfortable so the nurses asked what else they could do for her, she just said, "I am fine, I will deal with it". What? She is 14? I have tears every other moment, some of awe of this little lady, and some of extreme pain in my heart because I can't take hers away. And yet through all of this, we can see a little bit of Kasi through a joke or a smile.
During this time, which was lasting most of the afternoon and early evening, we sent out prayer requests. Well, here it the rest of the evening.
After Kasi sat for about 2 hours, yes, 2 hours!!!! She went back down in bed. She has some more coughing spells and couldn't get the "stuff" out yet. The nurse gave her a little Tylenol and her very own suction. Oh, and in the middle of everything above, Kasi got a fever. Well, within about 1/2 hour to an hour she took a huge jump forward. Seriously! Her fever was gone, she sucked everything up, she could breath, her oxygen sats went up, her coughing was productive but minimal because she didn't really have anything to cough up and she actually watched a little TV. She smiled and talked tonight and she gave the nurse a hard time. She is still using her button for meds, but they turned them way down.
My heart has been on this roller coaster ride today, from being a helpless mom watching my child suffer to a over joyed and thankful mom who wants to do a happy dance before God.
I don't know if you all read my post from last night, but I posted something my friend sent to me about God being all over in this room. I will tell you that I didn't need to see His visual presence because I saw the result of Him. Like a wave of prayers going before the throne of our Father on Kasi's behalf. My daughter, God's child. It is so humbling to know that you all stormed up there with your pleas while I prayed silently over her while helping her breath, just holding her hand and kissing her forehead as the nurse suctioned her out all the way down her throat. Watching her gag and look through those eyes at me as if to say "help" and I just turn to the only One who can and He did. God has done amazing things for her. I am excited to say! Please pray for a good nights rest for her tonight. It has been an extremely long day. She needs rest to get better too.
Praising our Father with all of you!!
Jodi
PS.....she still has a fight to fight, she is beginning to win this round!

Day 2 in the PICU

2010-11-06T11:29:00.000-04:00

Here we are once again sitting here watching Kasi work on getting stronger. She is a little confusing for the doctors right now because her art line is reading a totally different blood pressure then her cuff. They are going to start taking more with her cuff to see what they can do to start getting good readings all of the time. They thought the art line was good, and they were actually going to treat her for high blood pressure because it was creeping up a little bit. I asked the nurse to take it with the cuff and that is when they started to see the BIG difference. So we are not really worried at this point because the numbers aren't super high for her. She has a lot of fluid on her body so that keeps her blood pressure up. When her kidneys decide to kick in and start up really working and have adjusted to good blood flow we should see a difference in her over all recovery. This takes a while though. They are the ones that have to process the fluid and get it out of her system.
Her tummy has not started to kick in either yet. This is normal and for a surgery like this it might take even longer than the "normal" because it was very lengthy.
She is a trooper through all of this. She has to start to take deep breaths which are super hard for her to do. Also, she is starting to have some of the fluid in her lungs go into her tissue. We are doing these exercises once every hour to help the fluid not settle into her lung. It would be a big step backward if these would settle into her lung tissue because she would have to go back on the breathing machine. She is starting to cough which is extremely painful.
This could be very repetitive and that is because it has taken me a long time to write. Dr.s and nurse have been in and out all morning. I will keep you updated, but things change all day so I will try and some it all up at the end of the day when all is quiet.
Please pray for our whole family as Nathan is starting to really feel me not being home. Ben has called up to talk to Kasi because he too is missing us. We have a long way to go and this might be a little overwhelming for those who don't understand fully. Aubree had a hard time seeing Kasi like this too and it is something that is in her memory. It is good for growing purposes and for Kasi to know she is loved by all of them, at the same time hard to see such grown up stuff at the age of 12. Ron is home with the three kids and that is hard on him too because he longs to be at Kasi's side. And Kasi only will let me out of the room if she is sleeping and that is only when someone else is here to relieve me. So it is a long process and we are working on making it as comfortable as we possibly can under the circumstance.
Thank you for all of your prayers and keep them coming! This is a long haul!!!
Love to you all....

it's 9:00 pm first 24hrs in the PICU

2010-11-05T21:51:00.001-04:00

Today turned out to be an uneventful and at the same time long day. Kasi has made fun of me and stuck her tongue out at me today. Makes me feel good to know she is all there underneath all of that medication. She is an outstanding little lady and just saying that is not enough so I will tell you a little about her day.
I can't say she ever had a "morning" except for the fact of actual time. At the beginning of her day she had doctors and nurses come in and out. Dr. Stanley came in and his partner as well. They are very please with her progress so far. The nurses have been awesome to her and help her a ton. She has started to get some fluid in her left lung because it was deflated so long in surgery. What they are doing is pounding on her chest in the front and the back to loosen the fluid up so she can cough it out. Now think about that for a moment. She has just had major heart surgery in which she has a HUGE incision that runs from just under her arm in the back around to the front of her body and down her belly. They pound on her back and front on the same side they did her surgery. OUCH! Kasi looks up at me with eyes that say "mom, please have them stop" and she tells them through her tears that it really really hurts. The nurses make sure she knows how important this is for her and they continue, and Kasi's reply to them is, "okay". She says it in one of the weakest voices that represents someone so strong. She also has been hot and cold all day, but she doesn't have a fever which is good. My friend Kristie is up here and was rubbing her feet while I was doing something with her hair. Well, she waved me off and told Kristie she could continue and then gave me one of her ha ha ha smiles. Not a full smile, because she can't with all of the fluids on her, but enough so I knew she was picking on me. Note she is not really "awake" or "with it" when this happens because of meds. But we get small glimpses of that feisty young woman inside of her. Later on in the day Ben called on my cell phone. He wanted to talk to Kasi, so I had to explain that she can't talk but she can hear him. I put him on speaker phone and he said "hi and I love you" to her. I pick up the phone and notice Ben hung up. I told Kasi he called just to talk to you. Kasi.....sticks out her tongue at me and goes to sleep.
After a long day of sleeping and trying to heal Kasi had a bath. This little one had to have been held in Jesus arms through the whole thing. She was rolled and rolled with out complaint. If you could see her, you would understand what a big deal that really is. I am amazed along with all the staff here at her tolerance. She shows grace to every nurse that walks in the door and my most favorite moment of the day was when I came back from my shower I said "hi, mom's back" and she grinned from ear to ear and her eyes had peace. I can't explain that moment either, but it was a heart melter.
She is pushing her pain button more now, but that is because she doesn't like being pounded on. I wouldn't like it either, but there is no other option. Please pray that the fluid goes away and SOON!
God is working all around us here at the hospital. I have to share what one of my friends sent me via facebook. It is exactly where my heart is:

I didn't want to sound dorky, but I wanted to tell you that I just could imagine what that room looks like for REAL....by that I mean with all that we can NOT see.....it's a room PACKED FULL of God's glory!!!!! I'm imagining angels and beauty beyond our descriptions!!! I wish our eyes could see it just for a moment!!!!!!! Whether we see it our not, it is reality. Jodi, you and Kasi are surrounded by Him!!!!

Just lifting you before the Father so often Friend.........

Hugs!!!!

And from another friend to Kasi because of God things happening out side of these walls with kids:

Hey, Kasi. So thankful for the good news that step one--the surgery--is done. I know you have a long road to recovery but if love helps recovery, yours will be swift. My guys came home today with stories of how the teachers and students poured their hearts out in prayer for you today. Teachers all day long told students that if they wanted to pray and call the prayer pager, go ahead. Any time. They found out in 2 short months what I have known for years--you are amazing. Your name was also on the lips of the students I saw today in my class. What a wonder. Keep fighting, my friend. I'll be watching for more encouraging report.

And then one last one, that is God moving in adults:

Jodi, I was volunteering at our dance studio for a while yesterday and the subject of Kasi came up. The ladies in the waiting room were so moved by what was going on and were thrilled at the idea of the prayer pager - which alot of people are - well they wanted to call it and I told them that they had to pray first :) So there we were in the middle of the waiting room, holding hands in a circle praying out loud for all of you. As other moms came in, they just quietly joined us. It was amazing. Afterward, thru tears and hugs and gratefulness for this powerful moment that we shared, we all whipped out our cells and called the pager like we were giddy 5th graders and just got ahold of our moms phone. They have all me emailing and texting for updates. I just want to share a very small way that Kasi and our God is touching others thru this journey.

I share these because they are big encouragements to me about the working of God through this whole process. I am touched by every one's posts, but today God meant for these to touch my heart. I am in awe of this pager going off all of the time. It sounds like I am getting attacked by bees. Okay, you know I had to make you all laugh, that is me! So thank you for all of your prayers!

Now on to what is yet to come. We will be in the PICU for a few more days for sure. Kasi is so strong because she is God strong. I talked to her a little bit about the first of my friends posts above. She smiled and wished she could see them all around her too. She has a long road to go yet and everyone here seems to be happy with her progress. We are just waiting for things to start coming out and off from her body. Maybe tomorrow will be a better day for her to sit up more and for pain control. We will start to see the nurse coming with the pounding paddles and push her pain button. This will help her out a lot. We will continue this pray at her bedside and all around this hospital. I will pray for her lungs, heart, chest, incision, tubes, drains, IV's, Art line, central line, NG tube, and even her compression socks. She will be and always is completely covered with the mighty hand of Jesus. Keep praying Him into this place! We are seeing Him at work around us, not just in Kasi's case, but with others seeing Him through us.
We love you all! And it is time for a little sleep up here....
Jodi
If you want to send a card, note, or whatever here is the address for Kasi:
Kasaundra DeRoo
Pediatric Intensive Care Unit
1500 E Medical Center Dr
MCHC F5124 Box 0286
Ann Arbor, Mi 48109-0286

challenges

2010-11-05T08:27:00.000-04:00

Today is going to be a day of filling her will fluids and trying to lower her heart rate and up her fluid out put. She is being extremely strong and of course she is not having much pain medication for the surgery that she has had. She looks better today although if most of you would see her right now you wouldn't recognize her. Her swelling has gone down a ton, but she still has a double chin, bags under her eyes and her lids are super swollen. She will start to work with a respiratory therapist today to help her cough and take deep breaths. She just had a chest X-ray and we will see what the results of that are soon. Pray against pneumonia!
They are all amazed at her pain tolerance and her passiveness. She doesn't even really complain when she is uncomfortable. God is with her and we can see that once again. He holds her close and gives her relief from what could be almost unbearable.
As for all of us, we are doing good. My hives are going away PRAISE THE LORD! Seriously, you have no idea how bad they were. Today, they are less again and maybe in a couple of days they will just be a really bad memory.
I love this pager going off all of the time and many people ask about it which is nice to be able to share how the body of Christ works together. ( 474-0246 ) I have to tell you one story about it. When we were in the pre-op room it was going off and each time it did the doctors and nurses all checked their pagers. It was a nice smile for me to say, oh that is just me! I have more stories too, but not enough time to type them right now.
Keep posting on my facebook wall, I love to read the stories and post on here too. It is amazing how many people are being God's light through this time. God is good!
Love you all,
Jodi

Prayer needs

2010-11-04T23:50:00.000-04:00

Kasi is doing good. She is need of prayer for her blood pressure. For the first time it is too low. Yep! They are trying to get more fluids in her to help her kidneys, but it seems like she just wants to get rid of all the fluid they give her.
She looks very puffy and pale. She has many many tubes in her body. The ones in her nose are driving her nuts. When she is awake that is. She is still struggling to wake up. Her belly hurts and she coughs once in a while which cause a lot of pain. I would put pics on here, but it is not for all to see, just because it is troubling.
Please pray for her blood pressure to be stabble. For them to figure out what is going on with all of that. Please pray that her heart rate stays down too.
I will update again in the morning. I am tired, but I will stay by her side!
Jodi
PS....God knows what is going on, but I need to ask you to pray for the kids that are being taken here on the hilocopter. It is landing on here once again, and that is the second time in a 1/2 hour. So, someone life is changing....God please give wisdom, guidance, peace, and healing to the kiddos that are coming in!

Dr. Stanley's report

2010-11-04T16:52:00.000-04:00

Dr. Stanley just got done updating us on what they did in the OR. They were successful with what they did, they ended up patching the aorta from the top down to the kidneys. He did leave her aorta alone just past her kidneys and he said he is not worried about that right now. He is hoping that will grow a bit after it has good pressure to it. Her aorta had grown some alternate routes around it and that is why she did not have as many symtoms as the normal coarctations. There was turbulance though and that was taken care of by this surgery which is a great thing. They will try to have her off the vent when she gets out of surgery and into the PCTU. She might need blood yet tonight too, but we will see. She is not going to look good, but he is very happy with her progress. It will be after 6:00 before we see her and I will update more then. Just know that now is the critical part. He was confident about the surgery, recovery is big. BUT, as we know God is bigger.
I will type more later, we are getting ready to move!
Love to you all!!
Jodi

they are closing

2010-11-04T15:48:00.000-04:00

We just got the update that Kasi is doing great, the patch is done, and they are starting to close. It will about 90 more minutes and then we will talk to the doctor. From there we will be able to see her, but not for a bit. She will be going to the PCTU from surgery and we will be able to see her there. I will let you know what Dr. Stanley says when we talk to him.
Sing Praise!

update....

2010-11-04T14:34:00.000-04:00

We just got an update and she is doing good. They are just starting to put the patch in place. Kasi has been in for 5 hours and the surgery has been going on for about 4 hours. If they are just starting the repair it will be a while yet before she is out. Please pray for guidance of Dr. Stanley's hands and for the patch to "take" with no leaks. May God fill Dr. Stanley's mind with wisdom and keep his hands steady. May Kasi's spinal cord be protected and her kidneys keep functioning. Lord, hold her in your Mighty Hand!

a non-update

2010-11-04T10:40:00.000-04:00

Why am I saying a non-update, well it is because they haven't started yet. The rods in her back are making it hard for positioning on the table. Please pray for wisdom that they are able to start soon. This is going to be a LONG haul!! Really long, and the fact that they haven't started yet is meaning that she will be under even longer.
Also, many people are letting us know about the rainbow in the sky! Remember God keeps His promises. His promise to us it that NO ONE can snatch us from His hand. It means we have comfort that our forever is with Him. Pray for Kasi to fight with the strength of God!!!
One more thing, one of our prayer warriors said that she was listening on the radio to MOODY out of Chicago and well, they stopped this morning on prayed for Kasi. God is good! And it is loud before His throne on her behalf.
This is my song for Kasi

You Dance over me
while I am unaware
You sing all around,
but I never hear the sound
Lord I amazed by you
Lord I amazed by you
Lord I amazed by you....
how you love me
You paint the morning skies,
with miracles in mind
my hope will always stand,
for you hold me in your hand
How wide, how deep, how great is your love for me!!!

They just called out and they made the incision...
bowing to the Father,
Jodi

Here we are...

2010-11-04T09:17:00.000-04:00

It is hard to begin these sometimes because there is so much to say and I never know where to begin. Yesterday I told you about what was going to happen to the best of my knowledge. Now I will update you on where we are at in the process.
Last night was tough. I "slept" with Kasi in her bed, but she had to get up every 10 mins to use the bathroom because of the medicine she was on. They wanted her belly to be completely empty and I think they succeeded. We did sleep from about 1:30-4:00 am and then it started over again. She is very tired that is for sure.
This morning she was preped in a pre-op room where we all had the opportunity to pray with her. She was very very strong! She was smiling and talking to the Docs and nurses as they came in to ask questions and explain the day. When the time came for her to go down they gave her sleepy meds and that is when she broke down. She is such a special young lady who has to go through so much! She knows God's peace, but they are very real about her long haul in front of her.
One thing has changed from yesterday, and that is she will not be having the epidural. Her back still has a significant curve to it and with the rods and screws they feel they could not take the risk at this time. Although, they might revisit it later. That means she will have to have a pain pump where she pushes the button for pain. The problem with this is it is not ideal because the meds go through the whole body which can make it lazy. It will be harder to get off the breathing machine with this pump. In fact it seems like it is probable that she will be on the vent. They also have to use a different kind of vent for this because they will have to inflate only one lung so they can move the other out of the way for surgery.
We are doing okay right now. We are at peace right now, with a few tears of course.
I will update more later.....surgery will start officially at 9:30
love you all!!!

We are here

2010-11-03T20:48:00.000-04:00

Well, where do we start, this is the first post of many to come. I will start by saying that your prayers are being answered and there is a since of peace in my heart. This is good because in the last two days I have come down with a bad case of the hives. YUCK! I am sure it is because of stress, but I know everything will be okay and God is in control, even though I like to try sometimes. I should have learned this by now you would think. Sometimes what seems so simple to say is so hard to practice. This is one of those things for me.
We made it here on time today and had a nice lunch. When meeting with Dr. Stanley we have learned that he will do what he needs to do when he is in the OR. He has 2 plans, but he said he might be up to plan 7 or 8 by the time the surgery is done. In other words, her body is very different from the "normal" coaractations and since she has had this done before and with this being her complete aorta, taking into consideration her screws and rods, this will be a challenge.   He is pretty confident though that surgery will go okay, but he doesn't take it lightly. It is after surgery that most problems occur. So these prayers need to keep going for Kasi to be a fighter. She has a fight to fight that is for sure. She needs strength, not just strength of her own, but God's strength.
Her day will look a little like this tomorrow. They are going to start an IV at midnight tonight and give her fluids and start some antibiotics. She is on clear liquids now and a medicine to clean her out.  At 6:00 am we will start coming along side her for prayer and at 6:30 she will be moved back to the CVC for her surgery. They will start all of her lines over there. She will have a central line going in at her neck, a Art line going in her wrist, several IV's, NG tube, and a chest tube when she comes out. She might still be on a ventilator too.  This surgery will be a long one and the nurse will report every hour to hour and a half. She will be moved from surgery to the pediatric cardiovascular intensive care unit. ( PCIC ) and she will remain in there for about 6 days.  Not 6 for sure days, but around that many.  They are hoping to be able to put in a epidural for pain, but they are not sure if they will be able to because of her rods. There is a lot they are going to figure out tomorrow because of those rods. Positioning is another thing, they usually roll the patient in surgery onto their side a bit, but she might not be able to be moved in that way. So, we are back to the fact that she is just different.
Please pray for wisdom for the doctors, Dr. Stanley in the main Dr. in charge, but all of the nurses and staff that help with this whole process. We know that she is in the best hands, in the world and beyond with God on our side. Pray for peace tomorrow too.  Pray for the mind, hands and eyes of Dr. Stanley. May they be guided by God Himself! God is our strength, Jesus our love, and the Holy Spirit our comforter....resting in Him!

Love to you all!

Jodi
We do have a prayer beeper up here...474-0246 is the number.  When you pray you can call it and it will beep on our end.

Fundraiser

2010-10-29T11:55:00.000-04:00

Here it is the 29th of October already. It seems like just yesterday I was talking with my friend saying, "I don't know how we are going to make it with all of our bills when we won't be working. And who knows what will be and won't be cover by insurance since we have had things denied before because it was unusual." She just said to me, God will provide and I have stuck to that from that day on. It wasn't until a few weeks later when she said to me, God woke me up in the middle of the night and basically said we need to have a fundraiser. Well, most of you don't know this, but it started off with a brain storm on my deck thinking about what that would look like. She really felt like it was supposed to be a 3 v 3 basketball tournament or something like that. I said that sounded great, the name was even Dunkin' for the DeRoos. Then if that didn't work she had a backup plan and that was going to be a soccer tournament and she would have called it, Kicking for Kasi. As you all know neither one of those things happened. Why? Well, as I/we look back on it now, God's plans are MUCH bigger than we what we could think. She told me about how she would just put an invite out to people who know us and see who would be on board with helping out. To her surprise and mine, the list looks different that what we thought it would. The people that are helping were "called" to help. I am not kidding about that at all, they all thought "out-of-the-box" and had their ideas. I kind of feel bad at times for the load of responsibility that was place on Kristie, but it wasn't because of the ideas and such, it was because God was working in many, many lives and moving people to give and step up with ideas.
As I think about tonight and the fundraiser a few things come to mind. One of them is the immense love we feel for all of those who have given time and resources to make this work. Those who gave because they want to, not because they had to. It is a joy-filled feeling to know that as many people that gave, there are more people praying! This event has been covered in prayer this whole time and the evidence is huge. I keep thinking on this night and thinking back to how it began to where it has now come, I know that God is pleased. Not with the amount, but with the heart of those who helped, but even more, the Unity of God's people coming together and accomplishing something great that will ultimately bless His heart. He is in control of everything happening tonight and my prayer is that someone will see Him and His great love for His people and want to become part of that! That someone might have a seed planted, or hear of His goodness in the middle of struggle. The peace He gives and the love that he shows is beyond what we could ever express.
So, with all of this said, I just want to thank everyone with my whole heart!! I want to do that now before the auction because I want people to know it is not about how much, it is about God providing for our every need. We trust that and we see that! We love you ALL! Whether you are prayer warriors, attending tonight, or just a reader of this blog. We are very supported by you all and we are blessed.
I will post more this weekend as we prepare for next week, but I really felt I needed to say this to you all!
Jodi

12 days

2010-10-23T10:18:00.000-04:00

First I want to tell all of you who are reading this for the first time, if you want to hear Kasi's whole "heart story" you have to go to the post title "the whole story". If you want to piece together her back and her heart you will have to read the posts from December 2008 when I started the blog.

Here are 12 days out from a life-changing surgery for Kasi. As it gets closer there is so much to do and so many thoughts going through my mind and heart. I am taking time to prepare myself mentally and spiritually. If eating means to stay strong physically, I do that well. We are healthy eaters over here for more reasons than just her heart.
The past week has been a journey of growth and discernment to say the least. I have learned more about how God has grown me in His whole process of healing and man's view on healing. I am excited in the fact that it was revealed to me by the Holy Spirit when something was a false teaching and I could stand up to it. This is something I worked through, not just a sense. It came with listening again to a message I heard on Sunday and sending it to a mentor who deals with these issues daily and has all of the teaching and theology classes to help me better understand. I have to say I am humbled by the fact that God has chosen to use me in speaking Truth and at the same time, knowing He calls us all to speak Truth and stand up for the Truth. The beginning of the week was filled with an uncertain heart not knowing if I had over stepped my bounds and if I was wrong in my thinking and feeling. Wondering if I was too emotionally invested in something having been through, all kinds of teaching on healing desperate for answers, and now knowing what I have learned and thought to be true, is really Truth! I have also recognized that this happened at a time in which Kasi's story is becoming well known to more and more people and the enemy was trying to distract me/us from God's work. Well, great is HE that is in ME, than he who is in the world! AMEN!!
Yesterday a reporter came over to talk with our family regarding the fundraiser that is being thrown for us. I have to say, I think he walked away knowing too that Kasi is a special girl who knows and loves Jesus. She is mature beyond her age that is for sure. In fact he said I can see in your eyes that you are "old" or mature. One question he asked her is if she wishes she could be "normal" or do "normal" things. Kasi's response said a ton about her and life. Kasi said that she sometimes sees other kids and wonders what it would be like, but she wouldn't change her life because it has made her who she is. And she likes who she is. As a mom I too was in awe at her view on life. She was also asked about the risks involved in this surgery and she really hasn't thought about it, but more she focuses on the end. Knowing that surgery will happen no matter what we look forward to the outcome. We know God is in control of the outcome whether He chooses to heal her with a Dr.'s hands or if He chooses to reach in and touch her Himself. We have seen both in our life. We are preparing for this journey and spending time loving on each other and just being. We will rejoice in the fact that we have each other and our family is an incredible gift of God. He has brought us all together in great ways and we love each other with the love of a family, but even more with God's love that He has given us for each other.
As the reporter ended he asked me what one thing would you like to say or make sure we get in this article. It was this, pray. Pray for strength, peace, healing, all of the things that get us through. And that is what I ask all of you too. Although my prayer is greater for all of you and that is to add to that list a prayer of open hearts and eyes for people to see God through all of this. God is preparing hearts around us to see Him maybe for the first time. May we be faithful in sharing His love and the Hope we have in Him to everyone around us. It might be through the fundraiser, it might be at U of M. Where ever, when ever, may we all be a light shining His face among us!
Love to you all!!
Jodi

my head aches....

2010-10-20T20:43:00.000-04:00

Here we are 14 days from leaving to go to U of M and 15 days from life changing surgery. No matter how I look at it Kasi's life as she knows it and our life as we know it will be changed forever. I never thought 14 years ago that this would ever be an issue again. I am in the middle of a struggle about healing and what is God's will. What I think I have figured out, gets doubted by people who think that God's healing comes about because of something we do or don't do. My struggle is not in the fact of whether or not God heals, because I know he does. My struggle comes from the fact that people try to put man's work into the middle of God's divine healing or purpose. What I mean is, there are people who think there might be a sin issue to block healing or a miracle.
Here is my thought, feeling, and belief. God and God alone heals. God's ways are not man's way, nor His thoughts our thoughts. He is bigger than our biggest imagination so when it comes to healing and miracles, yes I do believe in them. I have seen them. I also know that he has a perfect path for us and that whatever the path is, we need to honor Him as we go down it. I believe prayer is a power tool we have for sharing our heart felt expression and all of our groaning we know God hears and understands because the Spirit intercedes for us. I am totally committed to praying, and looking for God's work among us. For sharing Him with everyone we come into contact with, and to encourage those who don't have the Hope we do.
My head aches with all of the other "stuff" people are talking about and right now, I can't go there. I do not have anything to do with Kasi's healing, I do not have a "block" and neither does Kasi. We are ultimately God servants. Called to a purpose, and that is to love.
We will love all along the way. We will love God, each other, and people who we come into contact with. I hope and pray I represent God well and one day He will see me and say "well done, good and faithful servant". And I am pretty sure He won't say "if only".
So, here we go, two weeks away and we need to be upheld in prayer. For people not to distract us from being God instruments or give us any doubt. We never doubt God and we don't want to ever put any doubt in our life of who we are. We are God's workmanship!
Thanks to all of you who pray for us daily. We need wisdom in the next couple of weeks as we move closer to the surgery date. Pray for wisdom for Dr. Stanley who has done only similar things as this. Pray for Kasi's body to be healed, either by a miracle, or by a surgeons hands. Pray that God will be seen through our life and that we may be a testimony to God's goodness.
Jodi

One Month to go.....

2010-10-05T08:24:00.000-04:00

Here it is Oct. 5 and I can't help but think how our lives will change in the next month. In one month Kasi will have had her surgery and will start her long road to recovery. Also, a lot will be happening in the month of Oct to prepare for Nov. 4. All of the "things" are good, but a reminder too of what is yet to come.
As we get ready for people to move in and out of here, Ron changing his hours to be home for the boys, and me living 2.5 hours away nursing Kasi back to a new "normal" a lot of emotional "stuff" is being dealt with. For instant, Ben said to me on Saturday, "Mom I really love Kasi." He continued on and said he really wants to love her forever, and I told him he could, kind of confused by where he was going with this. Well, he then told me that he didn't want Kasi to die in surgery. Ok, this boy has a 6th sense because we NEVER talk about that in those words. We have said there are risks but never to that detail with Ben or anyone else for that matter. I do believe I talked to Kasi once this summer while camping and Aubree once while in the van on the way home from soccer, but not in front of him. So, that just breaks my heart that his little mind is getting stressed over that. I of course talked to him in a non-threatening way about death and how when someone knows Jesus they never really die, but go "home" and we just get sad because it is going a while before we see each other. I also said that God is in control and whatever He has planned for our family is perfect in His way, not always ours. That is because we don't see His big picture.
God's big picture now is being revealed in and through so many through this fundraiser. I know people get excited about donations, but I get excited about all those who are joining us in prayer. You see the more people that know, the more people that pray. I have said before, but some of your are new to this blog so I will say it again, I want it sooo loud before the throne of God with everyone pleading on Kasi's behalf. He loves her more than anyone of us ever could and that is such a blessing. How it must bless His heart to see those praying for her too. The love for her, His child, is over whelming to me. I have been blessed to call her my daughter, but really on loan for a moment here on earth. Her work for God is her own and I must say, she has done an incredible job showing the Grace to others that God has extended to her. It humbles me to watch and learn from her.
I know in this last month before surgery that reality is going to start hitting her too. I know that her heart will start feeling the anticipation of a huge change in her life. She will need an extra measure of peace from the only One who can give it. And all of us too as we face being strength for her and the other kids. I too need prayers for the time to get everything done and wisdom for what is best for the kiddos while we are at U of M. Pray for their hearts and ours as a family as we anticipate being apart for a while. Pray for our eyes to see the beauty of God's work instead of being distracted by "stuff" that we will see and have to be in the middle of.
I thank you all for your prayers and support! We are extremely blessed to have you all!!
Love,
Jodi

PS...if you are new to the blog and want Kasi's full story check out the last blog post.

The whole story

2010-09-18T23:54:00.000-04:00

I have been encouraged by several people now to tell Kasi's story from beginning to the end. So with that, I have a lot of typing to do :-)

April 12, 1996 at 7:58 pm during the first thunderstorm of the spring Ron and I were blessed with the birth of our little girl, Kasaundra Kay DeRoo. She looked beautiful and had 10 fingers and 10 toes, the first thing you look at when you have a new little one in your lives. She seemed so perfect with her jet black hair sticking up all over the place. Her arrival was very normal although she was 2 weeks over due she was only 6 lbs 12 oz. We were looking forward to being discharged when we were told that she might be too jaundice to go home. I was shocked because that would mean she was not "perfect" and I had a little post pardon crying going on, and the combination of the two didn't work very well together. In other words, I lost it! After poking her little foot they decided to let us go home as long as we came back in after 48 hours. The weather was supposed to be sunny, and if any of you have had kids that are a little yellow you too know that the sun light helps. So, we put her in her bassinet by the window with only a diaper on and prayed that she would be okay. This was such a hard thing on me, who knew what was yet to come.
After a couple of days my mom and I took Kasi in to get checked and once again the levels didn't look ideal, but they were okay. We were to come back in one more time and get them checked. How much could I take of this! I remember at that time not really praying over her, but more asking God what is going on? This should be so easy. A few days later we went in one last time and she got another poke. (by the way I didn't go in the room with her because of my post birth bawling I couldn't handle it. Yep, I cried in the waiting room when I heard her cry. I laugh at that now!) In fact the last time an older guy was in the waiting room and sat next to me and said "don't worry I understand, my daughter just had a baby too". How funny now that I look back at that. At this blood test she was cleared and we were free to live "normally". So we thought.
At about two weeks of age I started to notice things about Kasi that I didn't feel comfortable about. She was spitting up, actually throwing up, all of the time. I took her into the doctor I was seeing at the time and she said it could just be reflux so we tried cereal in her bottle, but this wasn't really helping. I was in the office about two days later because I notice that her eyes were swollen when she woke up. Once again, I went home and thought all was fine and we made an appointment with an eye doctor to see if there was something in her tear ducs from birth. We waited another couple of weeks when we had a follow up appointment for her "reflux" and the doctors were starting to say that they didn't think she has reflux either. I was lost at this point because she was throwing up a lot and was kind of fussy. She seemed to be sweating a lot, but no one really said much to us about that. Kasi then woke up and one of her arms was swollen. I took her back into the office and I was told that her jammies were too tight. At this point she was about 3 weeks old and I thought I was the one with the problem. Her eyes were fine, her jammies too tight, and she really must be spitting up and not throwing up. I was nervous to even call when I would notice something so when I finally felt I had to call it was because Kasi was throwing up all night and we could not lay her down at all. It was so bad that I called my mom and dad and asked for them to bring over their recliner so I could rock her in that all night. There we were all night long and we went through 48 spit up diapers. Yep 48!! She had thrown up so much by then that her esophagus was bleeding. It was time to go in.
On Friday, May 25, Ron and my dad headed up north to the cottage and my mom and I took little Kasi back into the doctor. What we were told this time is that Kasi had pyloric stinosis and she would have to have surgery to correct this. This was the beginning of a very long journey, and many many lessons that God would teach us.
Kasi had lost the equivalent to an average adult losing 40 lbs in 24 hours. She was very sick. At 5 weeks old she has her first surgery to repair her tummy so she could start eating and keeping food down. This surgery was supposed to be about 1 hour long and we would have to be in the hospital for about 24 hours. After a 3 hour wait the nurse finally came out to report to us. We were told that she was doing fine, but she suffered from a little tear in her intestine as well as the pyloric repair. Because of this additional repair we would have to stay in the hospital longer, but they assured us that everything would be okay and she would be going home soon. Although not in time for the Memorial Day weekend.
We went in the recovery room to see her and we noticed that the alarm kept going off, but they had silenced it. I asked about that, and the nurse said they are really touchy, but not to worry about it. I really tried not to think about it, but it gave me a funny feeling. I knew they were there for a reason, but I seemed to be the only one that was concerned. Once again, I kind of blew it off thinking that I was the one that was going crazy being a new mom and the things I was feeling was just being anxious about that fact.
When we made it on the floor to our very nice private room I seemed to get a little more relaxed. It was such a relief to know that she was okay now and we would once again try to live that "normal" life. Life would be a bit different, but a new normal would be good and I was excited for that. As my mom and I, one and each side of Kasi's bed, rubbed her back we noticed that she was started to get agitated. She was in a bouncy seat so we could put our arms under her and kind of hold her while she had tubes going in her nose. She was uncomfortable, that was for sure, but we were noticing her get "different". After watching her for a minute or two we both yelled, "she is NOT BREATHING". She was done fighting for a moment. Her body had gone through enough and she, at 5 weeks, quit. I will never forget that moment. Watching her, yelling down the hall, as my mom pushed the nurse button. If you have never witnessed a code blue on the floor, it is something you never want to see. Especially when it is your child. Nurses and doctors flew in the room and I remember standing against the wall in shock really and then looking at Ron who couldn't watch any longer so he was looking out the window, tears running down his face. As I recall this now even it brings me back to that place as if it were yesterday. So much happening all at once. I am not ever sure how long they were all in there, but I do remember that night wondering what was really going on inside this little one of mine. As I slept by her bed I didn't even close my eyes. I marveled at her and wondered what was ahead for us.
The next morning our nurse came in and wanted to talk to us about something she was thinking about and things she had noticed about Kasi. She began to tell us that at night she had listened to Kasi and heard a heart murmur and although a lot of kids are born with a heart murmur (which just means she had a noise in her heart) it was something she felt she needed to tell a doctor about. She had made all the calls and we were told that a cardiologist named Dr. Malcolm was going to come down and just check Kasi out. She was very nice and didn't seem to make us overly nervous about anything, she just wanted us to what was going on. We were very grateful for that nurse because what she had heard was something so great that it has made a mark on people's hearts every where. Her ears were the instruments needed to get us on the right road for Kasi's complete healing. We just didn't know it would take so long.
Dr. Malcolm came in our room and did an ECO of her little tiny heart. Kasi laid in Grandma Brower's arms while he did his whole test. It was amazing to see how still she would lay for her. Kind of funny because we would take her along when she was 1, 2 and even 3 just so Kasi would lay still in Grandma's arms for the tests. Otherwise young kids have to be sedated a little bit to lay still.
The news we received after the ultrasound was mind boggling. We were told that little Kasi had a coarctation of her aorta and that her aorta would need to be repaired. It was something they felt they needed to do right away because her BPs, blood pressures, were very different in her arms then in her legs which showed that the narrowing was major. She was hypertensive, or she had high blood pressure in her upper body, and hypotensive in her lower body. Her lower body includes her belly, legs, and spinal cord.
Our world was shaken. Not to mention that she was so weak from her first surgery and being so sick with her tummy issues that we were going to have to wait until she was strong enough to survive a second surgery. Dr. Malcolm started her on meds right away and we met Dr. Rudolpho Neirotti, the pediactic cardiovascular surgeon at DeVos Children's Hospital. We felt blessed to have such a great doctor at that hospital to do this surgery. He has amazing ability and is known all over the world. We we relieved to say the least because we thought that he was the one to save our little girl.
A week went by and we getting ready to go up to ICU so she could get ready for surgery the next day. She was so sick and I was very scared. I didn't know where to go for peace, of course we prayed for her, but at that time it was just a motion. Something you did because it is the right thing to do. I didn't feel peace.
It is the second week of June now and Kasi is all ready to go in for surgery. It is early in the morning and Pastor Rich came up to the hospital to pray with us and for Kasi. I remember being in the pre-op room and seeing all the kids that were waiting around the corner to get tubes in their ears, but we were standing next to a huge bed with a little tiny baby in it. (Kasi was now less then 6 lbs because of her tummy) I can recall so many moments so clearly now, but others are such a blur. It seems like God was speaking to me at those times, I just didn't understand Him. Yet!! The time had come for her to be wheeled away. She was covered by her pooh blanket and really out of it. She already had her central line in the night before so she was all hooked up which was hard to see. I gave her a little kiss on the bridge of her nose and then on her forehead, which I still do to this day when she goes in, and walked out into the waiting room. I remember the tears flowing down my cheeks unwilling to stop. I sat upright not moving, just sitting and waiting. A few people saw us sitting there and they walked over to us and asked us if they could offer a prayer for Kasi, and our family. Who knew that they were praying for a lifetime of things, and miracles...
About an hour into the surgery the nurse, Kathy, came out for her first report. Things were going really well. They had opened and put a camera (I am not sure what it was) down her throat to check from that view what they were looking at and to make sure nothing else was going on with the heart. They had found that she also had a hole in her heart between the two chambers. This wasn't anything major because they can grow shut on their own, but it was something we would have to be aware of and look into sometime in the future. Kathy then told us how she would be back, but it might be awhile for the next report. I got up and got a cup of coffee trying to take everything in, which wasn't going over so well. About a half hour went by and Kathy came out of the OR. Her eyes were full of tears and she came and sat right next to me. I will never forget the words that came out of her mouth that day. She told us that Dr. Neirotti was closing and that the narrowing that they saw, measured, and went to repair was gone. They tried to look at the hole that they had just found in her heart, it too was gone. Kathy, who like me now, knows the power of God and was in tears because she saw first hand a miracle of God. Dr. Neirotti, did tie off her PDA (seriously look it up because I don't know if I could come close to spelling that one right and I have a lot more to this story to type) which was as large as her aorta itself. The PDA brings oxygenated blood to the baby in the womb. This usually closes on it's own in the first few days of a baby being born. Sometimes it has to be tied off, mostly in premees. Kasi's had to be tied off because it had not grown shut yet because she had a coarctation. Had being the word to use at this point and we were all stunned and confused. At the same time our Pastor said to us all, "we just witnessed a miracle" and that we did! I know that God was in that OR with her and laid His almighty hand on her and healed her. I wish I could say THE END or "they lived happily ever after" but that is not the case.
Kasi went from the OR right to the PICU, pediatric intensive care unit, remember that because it is the only time I am going to spell it out :-) She was going to have one on one care because that is the protocol for Dr. Neirotti's patients, which I as a parent LOVED! Although I couldn't stay by her bed at night I did stay in the family waiting room and slept in a chair. It has been a total of about 2 1/2 weeks that we have been in the hospital and I didn't step one foot out the door. You know I didn't miss it either, but people were starting to worry about me. I guess I understand why, but Kasi was my baby and it was my job to take care of her. That was my thought process and I wouldn't leave her. The next morning when it was time for the rounds to take place I was asked again to leave the room so the Dr.s could discuss her case. They felt that Kasi was showing signs of distress when she was breathing so they were going to start her on some thing to help her not get pneumonia. A respiratory therapist would come in and doing all kind of "stuff" to her which she didn't like very well, but after a while it didn't seem to be helping and she was going down hill. Her oxygen level was going down and she started really struggling with every breath. They ordered an X-ray and found that she had a very rare side effect called cylthorax, which is a punchure or hole in her lymph system which causes your fluid from your lymph system to drain in your chest cavity. This fluid was sitting between her lungs and her chest which made it close to impossible for her lungs to inflate. This is a very uncommon side effect to heart surgery, and even more odd was that it comes from having open heart surgery and Kasi had closed heart surgery. It was something to see them discuss who might have done this, they were debating between the Dr.s who put the central line in and the surgery itself. Either which way, this was going to be a long, long journey in the PICU now. At this point I am not at peace but kind of numb to everything that is going on. I was staying pretty calm and I would just spend my day holding her and caring for her. She didn't ever see her bed, yep she was very spoiled!! If you can say that since she was in the PICU. When the news came about this new development, that is when I started to have my break down. I didn't get it. Why God? Why would you heal her so incredibly and now give her this? Why Kasi? Why me? Why does this have to take so long? It was getting close to dinner time and my mom and dad came up to sit with Kasi so Ron and I could eat. As we got off the elevator Pastor Rich was getting on. We invited him to come for dinner with us, at the cafeteria because I still was NOT leaving, and he declined. We filled him in on what was going on and he said he just really wanted to go and pray over her for a while. Read scripture and pray, and then he looked at me and said this "God knows what you are feeling, after all He watched His Son suffer and die for you". And then elevator doors shut. Did he know all of my questions? No, but God did and it was another point that I look back at now and see God speaking to me, right to my heart. At that time, I didn't yet see it.
The next few days were really rough for me. I was not understanding this new side effect she had going on all I knew was I see all this fluid draining out of tubes that were stitched into her sides. The nurses would measure it ever hour and it didn't ever slow down. I was at my wits end when I left the room and went to the PICU bathroom. I remember vividly what I did and what happen. I walking to the bathroom looked at myself in the mirror and held my hands up to the ceiling and cried all of my questions right to God. I bellowed my whys? My biggest being why did you even heal her to give her this? As I sobbed I fell to the floor and heard God say "she is my child". I then fell asleep or something, and woke up to the nurse and I think my mom, pounding on the door. That was the moment that my life changed. All of this didn't have to make sense, nor did I need to know all the answers anymore. Kasi is God's child. On loan to us for a while, however long that while maybe, but she is His. I guess you could say that was my moment of salvation too. I did grow up knowing God, but now, I KNEW Him. It was the first step of many in my growing that has taken place over the last 14 years.
When I walked out of that bathroom everything looked different. I guess I did too because people started telling me how peaceful I was. I had a testimony and I knew it. God is with her and loves her more. That Sunday Ron and I decided to go to church since it had been so long. My mom and dad once again came up to sit with Kasi and we left the PICU with Kasi still hooked up to everything and tubes still draining. It was refreshing to walk in a be greeted by so many people who loved us and prayed for us. With my heart changed it was even better to be there than ever before. Pastor Rich saw us in church and when it was time for prayer he asked if the elders would just go over to us and lay hands on us while we prayed. Pastor Rich prayed for everything for us and mostly healing for Kasi. We felt God's presence among us which was a blessing! We then headed back up to the hospital refreshed.
When we got back to Kasi's room we saw the nurse in there looking to measure her fluids again. It was draining a lot still before we left so we were wondering why she was looking so intently at the drainage. We walked into the room and asked her why she was moving the tubing all around and such. She said it was because there must be a kink in them. That took me by surprise because she had been doing so well, draining. She looked again to see how much had come out and then told us that Kasi seems to have either stopped draining or something is wrong with her tubes. Our church service was 10-11 am....the last measure was the hour of 9-10 am. Nothing drained after. Yes, God did another miracle. You see this side effect that she had, had to heal itself and that happens over months. Yes, months. I was told to get a huge novel and when I am done with that buy another and maybe another because it would be that long that she would be in the PICU with this. It had been two weeks. I right away asked the Dr. if now I could maybe get a smaller book and he actually said no. The doctors thought that this was just a temporary thing and it would start draining again. So we waited, and waited. Three days we waited and then when I was going to go into her room from my sleeping chair, I saw a lot of doctors in the room and the bright lights on. I kind of freaked out a little bit and just watched. When they all left I went into the room to see what all the commotion was about and found out that her chest tubes had fallen out. YES!!! But remember they were stitched in....hmmm, God is good, and this time I gave ALL the glory to Him. She was His child and He did heal her and now we are going to see Him in all that He does for her. The doctors big debate was whether or not to put the tubes back in. They decided that they would not put them in, but they were going to watch her in the PICU for a couple of days just to make sure she was not going to start draining and not be able to breath. At this time, Kasi wasn't hooked up to anything. She was off all meds and was a "normal" baby. The nurses loved her! We dressed her in all of her cute little dresses and just played and played.
We were discharged from the PICU the week of July 4. And yes we were in the hospital the whole time. We went up to the cottage for the 4th and really celebrated life. That week we had our follow up with Dr. Malcolm and when we went there he did all of his tests and seemed to be really concerned. We went to get a chest X-ray and answer a bunch of questions. Kasi was gaining weight nicely, we thought, and she was a hot box. Dr. Malcolm let us go home, but gave me phone numbers to call if she seemed to be worse at all over the coming weekend. He must not have been able to take it because he called me at home the next morning. He asked me if she was still sweating and I said yes actually, "I had to change my shirt twice already". He asked us to come down to the ER right away and he would meet us there.
Ron and I packed her up, called family, and were on our way after only two weeks of being home. Kasi was admitted and we found out she was in severe congestive heart failure. This time they could figure out why.
I was at a different place when going in, knowing that God is in control and He would provide what we needed to get through this. We prayed for wisdom for the doctors and for clarity so they could figure this out. Finally after a few ECOs they thought they found what was going on. Another coarctation of her aorta. This time it was underneath her diaphragm which made it very hard to diagnose. They needed to do a heart cath to really see what was happening inside her little heart.
This coarctation was something very rare with collateral running around it. It looked like she had a butterfly in her tummy. Not only was this rare, with the combination of what it was and where it was, it was truly never seen before. Dr. Neirotti talked on our phone in our hospital room to many different doctors in many different countries asking and inquiring knowledge about her case. She seemed to be the only case ever like this. Dr. Neirotti was a little slow to act on doing this surgery. He really wanted us to explore all our options and Dr. Malcolm made other contacts. We did talk to U of M and a Dr. there that thought he could repair it, but he would repair it by patching it, and then at 3 patch it again, and so on until she would be done growing. Dr. Neirotti explained to us that was an option, but at the same time that is what he didn't want to do because he doesn't install "zippers in his children". With that one statement we wanted him to do whatever he felt he could to repair this. He researched, until one day they came into our room and said they could not wait any longer. Her body was not thriving anymore and we had to do something even though we weren't sure what that "thing" was. She was put in the PICU that night again and prepped for surgery. The next morning when they were finishing hooking her up, it was very different than the time before. She was hooked up to so many wires and she had little electrodes in her ankles and head. They were to tell them in the middle of surgery if her blood supply had been stopped too long to her spinal cord. The were measuring her nerves to see if she had movement and then they told us all the risk involved. The biggest being the blood supply being cut off to her lower body. We didn't know if she would survive this surgery, come out not being able to walk, or if she would be fine. This time though, it was different. I did sob, but my sobbing, was not a loss of control, it was a calling out to the One who was in control. This feels very different in the heart and it comes along with peace in knowing that God is!
Dr. Neirotti and all his God given wisdom actually used Kasi collateral's to rebuild her aorta so she had all her own tissue to grow with her. We are amazed at this yet today because there have been many people who have used this case to save others lives. During surgery they made a bypass around her aorta so she would not be cut off for too long. Now I look at her and yes, it worked! Her new aorta was doing great and grew with her until her back surgery in Dec. 2008. We went home after this surgery with only follow up appointments and actually in 2001 the Dr.s and nurse involved in Kasi's case wrote her case up in the medical journals. I am not sure what the name of it is, but it is one of the most prestigious ones there are. It made this a little more worth it to know that others can learn from her case.
And the learning goes on. Here we are 14 years later learning about how her body is once again struggling to survive and doing a great job at that. She looks great on the outside, but her insides are trying to find ways to get blood they need.
After her back surgery in which they straighten out her scoliosis, she grew 2 1/2 inches in that surgery alone. Since then she has grown two more inches for a total of 4 1/2 inches since Dec. 08. Her aorta did not keep up on it's growing with her. Her aorta is now narrowed from just past the aortic arch all the way down to her abdominal aorta. And you know how rare it was before, this too is something no one has really done before. There have been similar things done, but nothing the same. Kasi has scare tissue and screws in her back to work around. Her abdominal aorta lies right with the spinal cord and she has screws coming on each side of her aorta. Dr. Stanley at U of M has been following her case since she was a baby, which is a God thing, and has done similar things. He is one of only two that Dr. Neirotti suggested we see. Dr. Neirotti has retired and lives in his homeland of Argentina. We do not have "faith" in the doctors anymore, we know that God has placed Dr. Stanley here at just the right time for Kasi. We also know that God will give him all he needs to know to do this surgery. Her incision will be all the way down her chest and across her belly. There is extreme risk to this surgery and a huge recovery time. Dr. Stanley will be opening up her aorta the whole way and putting a patch on it.
Now on to how we are. Kasi is doing good. She is strong and she is more worried about how we are than how she is. I have my ups and downs and wrestle through these things with God. He is an amazing great physician and we rely on Him. Our faith does not waver. We know that God's plans are perfect and His ways are right. Understanding is not something I even ask for anymore. I know that His plan is bigger than my understanding. We are just a page, maybe a chapter in His book for His purpose. I am very happy and honored to live for His glory. And that is just what we are doing. We are excited that people have stepped up to help us through a fundraiser, financially. And even they are seeing God at work among them. I am growing in even more knowledge of Him as I have over the last 14 years. We have continued to go to the cardiologist every year and usually more then once. We have seen Kasi grow into a beautiful young lady who knows God and serves Him. With 4 kids now, two of which were a blessing from God in a unique way, we have learned more about Him and have learned that our strength only comes from Him. God's power is alive and well. We still pray for a miracle to happen in Kasi's life and we KNOW she will be perfect one day. That day maybe sooner than we would like it, but she could also live to be 100. Only God knows all of our days. We know this, God has proven Himself faithful, and she is His child. We rest in knowing that He knows our hearts and He holds us close......
More to come later, but this was the history of Kasi.....
and yes we were at the cardiologist yesterday and I will catch you up on her later when Dr. Malcolm calls me and I have the whole story.
Keep praying!!! God is good!
Jodi

God is moving.

2010-09-11T20:37:00.000-04:00

I am not sure where to start with all of the things that God is doing in our lives. From things He reveals to me about Kasi and her heart, with the start of Unity, and with conversations she has had with friends to the people who love us so dearly that they are listening intently to the call of God on their hearts to set up a fundraiser for our family. All of this is truly overwhelming.
I will start by saying I truly love my sister in Christ, Kristie, who has grown up with me all of my life. Been there for all of my ups and downs and without her in my life I know I would be a different person. She continually points me to the Truth and gives her everything for our family even when she is extremely busy with her own family. She knows the meaning of the word sacrifice and obedience and I am very blessed to know her and be loved by her as I am. So THANK YOU! Also, thank you to ALL of you who are coming alone side her. I know it is because of your love for our God, Kasi and our family that you are putting so much time and effort into this fundraiser. I can not tell you how many people I tell about the fundraiser each day and really point them to the fact it is because of the way God works in peoples hearts and lives that we know we will be provided for. Isn't that just like our incredible God. When we have nothing, He gives us everything we need without our being able to do things ourselves. We, as a family, pray for each one of you as you plan and prepare for this event. We also pray for the hearts that will hear our story that night and hear about the amazing faith of one of God's most amazing young women, Kasi. For more general information about the event, please look at the paragraph at the top of my blog and you will find an email address too. I will update this when they give me updates.
These past couple of weeks have been the first weeks of school for Kasi. She has done really well with the adjustment of schedule and sleep. She started Unity only really knowing the people from ACS, but without being really nervous she has walked into Unity and has already made a ton of new friends. She has come along side some people who maybe would otherwise sit by themselves at lunch. She is trying to get some of them to actually all sit together so they can have a big group of friends, and then last night while talking to one of her new friends she really was a voice of encouragement to someone who after her first couple weeks felt like on outcast, or different. Some of these things are so over looked by the "typical" teenager that Kasi's eyes and mostly her heart are drawn too. She reminds me of that Brandon Heath song we sing so often called "Give Me Your Eyes", the difference is, she does live it. I am so proud of who she is and who she is becoming, she makes me smile.
Now on to the stuff of real life that we also get smacked in the face with. Kasi's surgery will be on November 4 at U of M. She will be admitted into the hospital on the 3rd and that will be the start of our long journey of healing and recovery. She has been put on blood pressure meds in which help her in her activity to get stronger for a better recovery, but lately she has been feeling a little tired. It is not the normal tired we feel, but she explains it as her body is really tired and wants to be done and rest. Not muscles, but her insides. She also has been getting a pale color to her and sometimes almost yellow. I took her into the Dr. yesterday and we will have lab results on Monday. That may or may not tell us what is going on. I guess I am asking that you all pray that she is healthy! I am hoping this all will just pass and she will once again be able to feel good for a while before surgery.
A few people are asking me what Kasi is thinking or feeling about the surgery. So, with that I say, she doesn't say much. We have talked about all of the risks and she is really ready for whatever she may have to go through. Also, I do know that her heart once again is more worried about us then herself. Yep, she doesn't worry about herself, but her family.
I have talked to alot of people about all of this and God's will in this. I have to say, I know that some people think that this is not God's will for her and I have to answer that with why not? God's will is perfect and good. And I see all of this that happens because of her story and because of the person she is and is becoming I don't see what is not perfect and good. What I see is a refining fire that purifies and makes us more like Christ everyday. I see people pulling together to work for a greater cause then they could ever do themselves. I see Kasi saying to a new friend you are not weird and a heart of compassion for those who hurt. I see a girl right now sitting in my living room laughing and smiling at the simple things of Nathan. I see people stepping up and listening to God's call on their hearts. I see people supporting each other because of a mutual love. Mostly.....I SEE GOD! In all of this I see Him. I can't explain why some people have to go through things in life, but I do know that He will never give us more than we can handle and I also know that sometimes you have to change your view in order to see Him in the middle. We say it all the time, God is good, I am wondering, do we live into it? Even in the middle of the hard times. I am right now clinging to the Truths that I know. One of them is Kasi's life verse:
Jer. 29:11 "for I know the plans I have for you declares the Lord! Plans to prosper you, not to harm you, but to give you Hope and a future"
Another GREAT passage is:
2 Corinthians 1: 3-7 Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.
May the God of ALL comfort invade our hearts through the next few weeks and months!
Love to you all!'
Jodi

pondering and processing

2010-07-29T18:32:00.002-04:00

With August being right around the corner it amazes me that 14 years ago in August was Kasi's last major heart surgery. She was in the hospital for a few months and she was just not thriving anymore so the Dr.'s had to do something to help her. Her narrowed aorta and collateral's that she had grown were not bringing enough blood flow to her lower body and her upper body had extremely high pressure that was getting out of control. She was on every kind of medicine and it just wasn't helping her any longer. She was in extreme congestive heart failure. The only solution was to go in and repair her narrowed aorta, but they really didn't know how. 3 very smart Dr.'s went in and actually rebuilt her aorta with her own tissue because they used the collateral that her body had built. This repair was and still is amazing. Never had something like that been done on such a young baby. I am talking NEVER. So amazing is all of that, but what else is amazing is that this whole case was written up in one of the most well known medical journals.
Now here we are 14 years later walking into a room of Dr. Stanley, who is the best of the best in the world when dealing with these type of issues. He is why U of M is known for their pediatric cardiothorasic surgery. And not only that only 1 of 2 in this nation that would have a clue in Kasi's case. Dr. Stanley walked into the room and looked at Kasi and said "I know your insides better than you". We all looked a little puzzled, but he explained that he has been following her case ever since she was a baby. He was so intrigued with it because it was his specialty and it had never been done on someone so little. And now 14 year later we are sitting in his office intent on what he has to say about her aorta issues.
It has been a week since my last conversation with Dr. Stanley. The last conversation leaving room for remembering, and looking ahead. What they found in the heart cath/angiogram, was two narrowings. The normal coarctation would be hour-glass shaped, so wide to a narrowed spot and then wide again. Kasi's narrowing, coarctation, is much different than that. Her first narrowing indents a little bit right after her aortic arch and then stays narrow through her diaphram to a second narrowing which narrows and stays narrow again. In order to fix this Dr. Stanley will have to open her aorta up the whole narrowed part, and then put a patch on her aorta. This means she will have an incision down her chest and across it as well. She will have to go on a bi-pass machine because of the length of time the surgery will take. They will slowly let the blood flow back into her aorta and make sure there are no leaks, and then they will close. She will be in the hospital at U of M for a week and a half to two weeks. Before she leaves she will have to have another heart cath done to double check how her blood flow is and check her pressure. She will then have 6 weeks at home for recovery and then go back to school 1/2 days.
Now to the part that I am pondering and processing. All of this "stuff" I just wrote about is very factual and doesn't show my heart in things. That is not the reason for this blog. This is a Journey in Faith and that is what I ponder and process. God has been calling me to read and re-read the story of Rack, Shack, and Benny....okay for all of you who don't watch veggie tales, it is Shadrach, Meshach, and Abednago. (no comment on spelling because I am not going to look it up right now) I have been pondering parts of this that have brought me to different places. First when I read it I think, wow, God calls us to this type of Faith in every part of our lives. And yes I am not about to get dumped into a firey furnace, phew. Or am I? Are we? Not a physical furnace, but a place where we could loose a life as we know it. Yes, process that. So I read on, and I see that not only were they prepare to go in the furnace for their Faith they went in saying, If God's saves us that is His will and if He doesn't they were still not ever going to serve any other god but the only One True God. Hmmmmm....more pondering. I have to remember that yes, Dr. Stanley is the best of the best, but if it is God's will for her to be saved He will save her, and if it is not His will, I will praise Him for freeing her completely. Yes, I write that with tears in my eyes, but the truth is our time on this earth is so very short compared to eternity. And Kasi loves God more than anything, her faith is amazing! So, I read on, and in the middle of the firey furnace, when it is 7 times hotter than normal, who is with them. Jesus. And that my friends is the peace that can transend all understanding.
Yes, we are looking ahead and praying for miracles to happen in this little ladies life. I believe in miracles!! I also know that our God is Sovereign. He is the same yesterday, today, and tomorrow, so in all of this I look at our yesterday even if it was 14 years ago. He changed my life then and is still growing me up in Him. I praise Him for Kasi and for the refining fire we have been through together. She has felt the hand of God is ways most people will never know until the actually see Him face to face. She has held Jesus hand as she fell asleep as a young child. (I know this because she told me to move) She has felt His presence on her in the middle of an MRI going way wrong and His peace laid on her. And when she was in kindergarten, I would ask who she played with and sometime she would just say "Jesus". Yep, and that God is the same God we turn to now. He loves her more than I could ever imagine loving a person. He holds her when I can not, and even tells me to move out of the way. Kasi is God's child, and in that we trust.
I will write more later, I just had to get this one out :-)
I will leave you with this verse that Kasi always claimed as a child.
"My heart and flesh may fail, but God is the strength of my heart and my portion forever"
Ps 73:26
Jodi

I love the fact that people pray for us. This is not our journey alone, but to be shared with all of you the body of Christ! May He bless you too in ways that you know can only be from Him!

What a week!

2010-07-17T13:42:00.003-04:00

So, I promised an update and here it is. This is a hard one to write because it comes after a long week of dealing with things that were a result of her heart cath/angiogram. On Tuesday evening we ended up in the ER at DeVos because of a hematoma in her belly that came from her procedure. She was in a lot of pain and after a very long night, they found that it was not bleeding anymore which was a blessing, but she will also have to live with the pain for a bit until it dissolves back into her body. We were sent home with instructions which included "if you have a fever of 99.5 or greater" you should return to the ER. Well, wed. night Kasi had a fever of 101. We didn't take her back into the ER that night though, I know, I know....but she was fine! :-) We did end up back at U of M though on Friday to check everything out. Of course when the Dr.s saw her hematoma they couldn't believe that it was were it was at. I guess these things don't ever happen in this place in the body. Well, never say never! We always say, only Kasi. She is already on restrictions so there was nothing really new for her to do or not do.
While we were there Dr. Stanley came in and talked to us to so we wouldn't have to have another trip up there on Monday. YAY!!! What he told us and what we saw in the images were what we saw in the ones from DeVos, but maybe a little better defined and detailed. The narrowings themselves are not super bad, but the pressure difference is the great cause of concern. Her kidneys are kicking out a hormone to boost her blood pressure so they get enough pressure to them. To give her blood pressure meds would be like a dog chasing his tail. It effects the blood pressures everywhere so the kidneys would kick out more hormone and it would go up even more. After a period of time this does do damage to the kidneys. Dr. Stanley did tell us that in order to do this surgery Kasi would have to be open all the way down her belly and across it as well. This surgery has very high risk involved and it seems a long recovery. Dr. Stanley will be talking with her cardiologist on Monday and I will then get a call from him.
Please pray for Kasi as she tries to process all of this. For Ron and I as we try and figure out how we will be doing this. Our family as we all process this. And mostly, for the Dr.s that they will be given wisdom to know absolutely what they are doing before they go in. This is everything BUT routine.
This week has been full of tears for us. Now we look to the future of uncertainty, knowing what is uncertain to us, is certain to God. As for my heart, I trust, believe, and have faith. I am also, still a mom and know that God shares my heart, because He too watched His son suffer.
Kasi is remaining strong, although it is starting to break her down too. This is okay though, she has alot in front of her that she has to think about.
I will update again later......when there is more to update!
Jodi

today

2010-07-08T22:51:00.002-04:00

Well, as today comes to an end we are still not sure if we are staying here at U of M or leaving. My assumption is that we are staying, but they do things differently over here so I am not quite sure. I do have to say I am extremely thankful for DeVos. We are spoiled!!! That is an understatement. The care here is great and the Dr.'s are the best. I am sure it will all change when they get their new children's hospital complete, but that won't be for another year. So, here we are in a room with 4, yep 4, other patience. One of which is a baby and well the lights have been off since about 8.
Kasi is doing well, she just ate for her first time in over 24 hours. She was hungry. She is in some pain this time. They went in up higher than usual. I am thinking it is because she just had a heart cath. in April so they choose a different sight. I am not sure though. She keeps having "hot flashes" or something because she will break out into and extreme sweat which is also weird. Well, we know she is one of a kind.
I am amazed right now at how strong she is. We have a girl next to us who 2 years older than Kasi and she had rods put in her back yesterday. Well, she can't get enough pain meds because she is just in sooo much pain. Her mom came over across the room, about 3 feet, to our side of the curtain, to talk. Kasi started talking on her own which was awesome to see her give out information about recovery. What the mom didn't understand was that Kasi had no pain. It might be a subject to discuss tomorrow :-)
What we have learned the is all the stuff we already kind of knew. She has two narrowings in her aorta. This we kind of knew, but never heard it explained that way. Her kidneys look good and her renal vessels look good too. What is happening is that her kidney are producing a hormone to try to get the correct blood pressure to them. It just so happens that raises her blood pressure all over and that is why she is in hypertension. So, we will see what the Dr. has to say about all of this and see what he is thinking to correct it.
I am tired and wiped out. I will write more later. My emotions wiped me out. Seriously!! This is all too real once again. The smell hit me square in the face when I walked in the door. Too much to handle at times. She is an incredible woman and I am really proud of her! Keep praying for her and for answers....
Love to you all!
Jodi

The start of another Journey

2010-07-07T22:29:00.002-04:00

Here it is 10:30 the night before a very important trip to U of M hospital. A trip that will hopefully reveal to Dr.'s what they can do to help Kasi live. Yep, I said live, because they way she is right now is not really living. We have been down many roads together and this is a start of yet another journey in her life, and a Journey In Faith.
Right now I am anticipating the things I always do, seeing her lie on the bed, laughing instead of crying. This is because we are very funny people :-) And those of you that know us well, know that we do truly laugh at life. I tell the girls it is a way I can extend their life. We do have fun together. All of that will run through my head and I will then look at her and see a brief tear in her eye through all of mine and give her a kiss and start (continue) to pray for God's hand to go in with her. How silly it must seem to our King that I ask Him and tell Him what I think would be best for her. I long for the day that she can be free from all of this "stuff" and live a normal life as a teenager now. I have said that prayer from birth each time she hits a new milestone of life I thank God for her and praise Him for what He has done for her. As I sit here I wasn't going to write because I felt like "this is sooo not fair" and "why does this always have to be her". Then I think, why not? God will NOT give her or me anymore than we can handle. This is a promise from our Creator. I will live into that promise and we will march forward declaring His goodness of the past and His promise to always love us. He holds her so close, it makes my heart so happy for her. I know God's love for her is so amazing because I have seen the change in her, at times almost like Moses when his face shown because He was in God's presence. I know she doesn't realize it, but it does give me comfort.
So, tomorrow, we will take her in to have another heart cath/angiogram done and pray that it will reveal a way to "fix" her. A way to give her life that she can actually live. We will pray for her safety as this procedure does hold new risks because of how many times she has had this done in the past. We will pray for peace for her heart and mine. We will pray for Ben, yep Ben who has had to have ice cream with the whole family tonight, had to go swimming with the family, and just be with the family tonight. He also asks to see Kasi tomorrow at the hospital, just because he "needs to be with her". His passion for his sister and his wanting to protect her is amazing. I love, love, LOVE to watch my kids together. They truly are a blessing, all of them. I pray that this is the final journey in which we have to travel. I pray we learn all that there is to learn to make us even stronger in Him. I pray that God will get ALL the Glory for the great things He has done and is about to do.
Love to you all,
I will update this tomorrow!
Jodi
One more thing. Please pray for my heart too. This is extremely hard road and knowing what is to come is crazy hard. I am up for any verse that you might have for us.....I know I got one from a dear friend. Be strong and courageous do not be terrified for the Lord YOUR God goes with you where ever you go.....now I will go to sleep singing that song.

Amazed

2010-06-22T20:12:00.003-04:00

Amazed. What a word to describe a feeling, thought, and process. Not what you all were expecting I am sure, but it is really how I feel right now. Not amazed in a God is so Amazing type of way, even though I know He is and I do feel that way alot, but this is more of how I am amazed at how situations bring up feelings from the past and thoughts go back to where I was 14 years ago. How the feelings of "out of control" and "God knows how I feel because look at what He watched His Son go through". At the same time I have a new anticipation of what is to come now knowing where I was before. Part of me wishes it to be tomorrow because then I wouldn't have to deal with all of this stuff that causes me to be quick to tears, but how real would that be? I am going to take the time that I have dealing with this from a mom's perspective and grow. Grow closer to the creator Himself. I know I can ask all of my "whys" but I already know the answers to those. For me it is a wrestle of who. Yep, who. Who needs to see God through this, who needs to know how great He is, who needs someone to sit next to them and just cry. If there is one thing I have learned is that my heart ache is not alone. When going to the hospital and actually looking around at those who are also there I really know that God surely does give me strength and Kasi too. What is the best part is that I get to share that through tears, hugs, prayers, and giving ears to others who wouldn't normally open to someone who "doesn't understand". So, as we move on this week and the weeks to come pray that we see those who need our shoulder and who can lend a shoulder as well. I know that this is becoming more and more real once again. I do praise God from whom ALL blessing flow and sometimes those blessings are in the form of tears. Tears that flow cleanse and heal.
Next week Tuesday Kasi and I will be making a trip to UofM for testing which will include blood work, EKG, and a chest X-Ray. We will then go back up on July 7 for her angiogram on the 8th. She will spend the night that night and we will discuss what will be done in surgery sometime in the next months ahead. It amazes me how easy it is to say all of these things, but how hard it is to process them in my heart. I look at her and she is a young lady. A true child of God. Her heart belongs to Him both physical and spiritually. I am anxious about what is to come, but with God and His Spirit with us, we will be okay. Kasi's faith is amazing and through my tears, she smiles. She truely shows the face of Christ to those around her.
Please continue to pray for us, our hearts, emotions, and for us to see those around us that need Him, the God of ALL comfort and peace.

I AM

2010-06-08T14:53:00.002-04:00

Today I write just to update and reflect on what has happened in the last few days. God has reminded me that He is the great I AM and that is really what I am holding on to and will need to get us through the next few weeks and months.

Yesterday we met with Dr. Stanley at U of M and little to our knowledge he has been following Kasi's case since she was a "tiny tike" as he called her. That was refreshing for us because then we don't have to go into all of her history and try to explain her body. He came in the room actually and told us that there are horses and cows, but Kasi, you are a zebra. Yep that is how unique she is on the inside. Little does he know that she has such an incrediable faith that all of this can't shake us because God's strength is bigger than our weakness. He will learn that about us that is forsure. Dr. Stanley will see a family that is on our knees and will see things just happen, because our God is bigger.

To kind of sum up our visit we were coming home and thinking we were going to have to go back in sometime for some tests and go from there. As of this morning, Dr. Stanley called me again and said sooner the better. I am currently waiting for a call from his nurse to schedule an appointment to have a look at her kidneys and aorta by her renal vessels. He then will review and we will schedule a surgery. There are a couple of options depending on what it looks like in there. One option is a bipass and the other is a patch. It really depends on how much scar tissue she has in there and other factors as well. We do not have a time frame in which this will be done. I am praying that it is all done before she starts school in the fall. Dr. Stanley also really stressed the importance of her inactivity and the fact that even having a close call with a deer on the road could cause her blood pressure to spike high and cause a stroke. So, with that, I pray for protection over her. For all of her body to get the blood supply it needs and that she may thrive as we wait.

What does this look like for her? I have talked to her a little bit, but she is very strong and at the sametime I am not sure she knows how to process this. I know I don't at times. We are super excited that we have found someone to help her, but helping her means we have a very hard road to go down. We once again are faced with life and death issues. We are confident that God is in control and that His will for her is perfect and for her to have life to the fullest. This doesn't mean that this world isn't full of pain and/or discomfort. We will face this "stuff" head on and go foward leaning and trusting in Him who has given her every breath. I, personally am at a mixed emotional state. I trust in God and right now I am praying that the Holy Spirit posess me in such a way that I can feel all of the Joy, Hope, and Peace that comes from Him. It is a process I understand, and right now I have to grieve a little of the past and all of the "things" we have gone through when she was a baby. I know we will get through this and we will see another piece of who God is and rejoice with Him. I am currently searching for those who need to see Him through us and looking to Him to reveal Himself in each moment.
To God be all of the Glory for each day of life! Don't take any of them for granted....do something for Him today!

UofM

2010-06-01T12:36:00.003-04:00

What a weekend it has been! I love holiday weekends when I can be with the family and their friends. Watching kids grow is a gift that is forsure. From Nathan crawling under our truck and camper to Kasi being 14 and so graceful in her actions. Of course Aubree with the soccer team and Ben just being Ben.
I think I have really learned in the last little while just to be and observe that which is around me. Interactions of people and how people respond to things in life has been very interesting to me. Maybe because I really understand how precious each moment is in life and what you are going to do with it really does matter. Where ever God calls us.
Now on to the U of M thing that this all started with. Yes, we are going to U of M with Kasi. This was the begining of my great weekend. On Friday I got a call from Dr. Stanley who is the vacular surgeon that deals with issues like Kasi's. Yes, I know that her case was not taken at first. The only thing I can say to that is that we didn't have it sent straight to him, but to a pediactric cardiovascular surgeon. Yes, Dr. Stanley was consulted, but it was not going to be his case. That is the way I can best explain it. Anyway, after a phone call from Dr. Stanley himself, I got a call from Kasi's cardiologist office who was SUPER excited that he was going to be taken over Kasi's case. I have read up on him and yes, he is the man who has experience and passion in this area. He desires to help kids with these unusual issues and that is a blessing.
I know some people have asked about going to Cleveland Clinic, Boston Childrens, and of course the children's hospital in PA. Well, Dr. Stanley does surgery for kiddos who go there for treatment. Yep, they get sent to U of M to be treated by Dr. Stanley. I really feel like God is making every piece fit together at just the right time. Of course He is!! That is our God! Amazing as always!
That is just a little update.....we will know more after next week Monday when she has her appointment. Pray for wisdom and patience as we go through this process.
God is amazingly good!!!
Jodi

The latest....

2010-05-27T13:23:00.003-04:00

I have known for a long time that patience was one of my weakest gifts, even though people would disagree with me on that. I know I am put on the patience list because it seems like everytime I turn around I am learning how to have more. Although different now because through the process I take time to listen and grow. So, as I grow I take you along with me.

I talked with Kasi's cardiologist today, Dr. Malcolm, and are going to work together and see what we can do to get questions answered for Kasi. He has sent things to U of M before as you know and we were denied. Now we are taking a little different approach. We heard from UPMC that they would not take her case because if they even see one child with something similar, it is not the same, and the similar ones they send to U of M. All of that to say, Dr. Malcolm's office has sent everything up to Dr. Stanley once again with a message to call me directly. We are hoping that hearing from a mom's heart might mean he would see her or give us other resources to draw from.
Also at this time we are waiting to hear back from Dr. Neirotti, who has requested to speak to Dr. Malcolm on the phone instead of email. He has been contacting all of his Dr. friends from around the world and seeing if he can get some insight. Kasi's case is so incrediably rare, if there was a percentage that I could give you of people in the world that have something like her I would, but there is not. She is one of a kind. She has been since birth. Dr. Neirotti is very passionate about her case and it is amazing that he is putting so much into this when he is retired and living in Argentina.
As for our family. We are asking for wisdom for all involved. Dr. Neirotti is the best of the best in the world, but there is One greater and that is our Father. He is the Greatest Physician in the universe. We are looking for man made fixes and we know that God can reach out and touch her body Himself. Whatever road he takes us down we will rejoice and be glad in. His grace is more than enough for each day. We continue to put one foot in front of the other knowing that He gives light to each step, and not to the whole journey.
These last few days I have really taken and step back and just really listened and observed my dear Kasi. I have watched as people have stepped up to try and "get things done" on her behalf and then read what some have sent into TV stations too. I realize that Kasi, through her smile and the kindness she shows, is an example of God's amazing love for her. I am jealous of her in ways. Let me ask you, if you know her have you ever seen her not smiling? Would you ever guess she was in pain? Would you know that her body is fighting for survival? I hope you all understand that when we talk about risks in surgery it is not a risk of success, it is risk of survival. Kasi is surviving! Her body has compensated for it's uniqueness. God has provided every breath for everyday. You have no idea how much I love Him because of His love for her. It goes beyond His gift of Salvation and on to His gift of blessings for each day. None of which are deserved by us, but given because of His emense love for us. If you ever doubt He is real I would love to take out my heart and give it to you, even if for a moment and you would know.
As we go on from here we will keeping looking for answers. We will praise Him who "began a good work in us and WILL continue it out until completion".
I will leave you with this thought for the day, week, or until the next post. (hopefully not long b/c the phone rings and I will have something to update!)
Kasi's life verse. She was given this by her 1st grade teacher and she holds onto this.

Psalm 73:26
My flesh and my heart may fail,
but God is the strength of my heart
and my portion forever.

We love you Kasi, and you truely are a gift to all of those who know you.....

Speaking the name of Jesus boldly with all of you,
Jodi

Also, we are setting up an appointment with her Nephrologist again to make sure her kidneys are still doing okay. Her Dr., who once agian was one of the best around and started the pediatric kidney transplant program here in GR, was let go because of "politics" at the hospital. We are going to see a different Dr. in the same office, but as soon as Dr. Bunchman goes somewhere else, we will hopefully be able to keep up with him. He knows her case!

UPMC

2010-05-11T13:20:00.002-04:00

Well, it has been a bit again since the last post, so I thought I would give you an update although it is not a very big update. What I can say is that God is working, and His work is amazing. Currently we are waiting to hear back from Dr. Nierotti, who is in Argentina, and Dr. Morell who is from Children's Hospital, University of Phittsburg Medical Center. This Children's Hospital is one of the best in the nation and we are praying for some direction from them.
Now on to how Kasi is doing with all of this. She was "ok" with the decision of UofM, but she is really tired of having restrictions. She is ready to be able to do things again and she is ready to not be in pain in her feet. It is becoming a "normal" to her which is kind of sad. I really don't like to hear about her pain being normal, because it is not. And it is not something a child of 14 should have to live with. She is a tooper though, you wouldn't even know that she has pain. She is really at rest with this, and I can only say it is because it is bigger than us. We are all have a sense of peace, but it is ONLY because we know our God is bigger. That doesn't mean that we are worry free because that wouldn't be human, we just know that we HAVE to put our trust in the One who is the greater, bigger, and healer of us all. We know that He has given wisdom to those who need it and we are trusting that we will find those people. This UPMC thing is totally of God and our connection to this place was only from Him! I am so excited to see what God has in store resting in His will, because His will is perfect!
Please pray for wisdom, and healing for Kasi. And of course continued peace.
In Christ Love,
Jodi

Finally!

2010-04-28T20:18:00.002-04:00

Today we finally heard something back from the Dr.s at U of M. It wasn't the news we were looking forward to hearing though. We know that Kasi's case is rare and very difficult. What we didn't know is that when you have a case like this it is hard to find someone who has experience and knowledge of what and how to do things. The Dr.s have ideas and all of the "fixes" for Kasi are too risky compared to her symtoms. Kasi currently has purple to black feet and toes and pain everyday. We were hoping to find something to relieve this and it seems like fixing the problem would be the best case senario. The Dr.s at UofM feel that what they would have to do to fix her aorta would have GREAT risk. We knew it has some risk, but they way they are talking they want her to have greater symtoms. Like hypertension and kidney failure. Right now that is good in her, so they are more on the reactive because of risk. I know that Kasi can't live like this forever.....so we are praying. Praying for healing that is! and for guidance. We know God has a plan for her and we are confident that His timing is perfect. We just need to rest in that and move forward looking and seeking His face through this. Kasi will learn a little more as will the rest of us as we move forward. She is really not happy about the decision, but she also knows that her Dr. is looking for second opinions. I too emailed Dr. Nierotti, who did her orginal surgery, and he is looking forward to getting her information and hopefully he will be able to give a little advice too. We know that God is bigger and in control of ALL parts of life.

waiting

2010-03-25T15:18:00.002-04:00

Here we are in the hospital waiting to go home after yet another long day with Kasi. It is crazy to remember how far we have come with her. I think about her as a baby in the hospital bed and how small she was. Now I look at her and she is such a young lady and more importantly such a woman of faith. I don't think if I were in her position I would handle myself as good as she is. She is just an amazing blessing.
Here is what the next week looks like for us. She will not be able to go to school tomorrow, and she will be on full restrictions when she does go back. Her aorta is renarrowed as we thought, and the measurements are 23-where the aorta comes off the heart, 14-mid way down, and then 4 where it is her narrowist point. The Dr.'s would like it at 14 at the least. They are currently sending out all the information to other places and other Dr.s. thoughts will be pouring in here soon. The Dr.'s are planning on having a meeting on Wed., because that is when they discuss tough cases, and Kasi will be the subject of the next meeting. Until then we wait and pray the right people in the right places, which God always is ahead of us on this one :-) Of course we are still praying for healing. This is our journey called life......with God leading us we know everything will be okay. It always is.
Thank you for all your prayers!
Jodi

she is in.....

2010-03-25T11:51:00.002-04:00

Kasi was just taken back to have her heart cath done. She is a little nervous about the fact that she will not be totally asleep. She did get "loopy" here in her room and was smiling even through her tears. Of course she gets that from me. Although as I get older the tears seem more willing to win. This brings me back a few years with the smells and the sounds. It is amazing what your body and brain do when you are brought back to a place that brought so much trama even years and years before. I am thankful for God's amazing grace that is felt in prayers of so many people. I am thankful for the family of God who holds us up. We will know pretty soon what her insides look like and then we will be sitting in recovery for about 5 or 6 hours. So, if all goes well we will be out of here around supper time.
Pray for clear pictures and a good sense of blood pressures in her aorta. Please pray for God's wisdom for all involved b/c there are a lot of Dr. following this. Everyone that comes in here has said how much of a unique case she is. It is a reminder to remember all God has done for her and us so far in her life. She is an amazing girl who loves Jesus more than anything.
Right now....she is safe in His arms.

on the road of Life....

2010-03-25T06:54:00.001-04:00

Today marks another day on a lone road of Kasi's life. Last week we had an appointment with Dr. Malcolm, Kasi's cardiologist, and he found that her aorta was not growing as it should be. We have been seeing signs in her legs and feet that made us wonder about the blood flow to her lower body. Today she will have a heart cath done and they will be taking pictures and measurements of the blood flow through her narrowed area. When that is done they will send out the pictures to the Dr.'s all over the world who have reviewed her case before and they will discuss an option for her. Please pray for Kasi. We have seen amazing things happen in her life over the last almost 14 years....she is such a blessing to everyone that knows her. We trust that God's will is perfect and rest in that. He is in control so we pray for the knowledge of the Dr.'s to come together and find a way for her to be able to live a "normal" life.

I will keep updating this once again. And I thank you for all of your prayers in advance.

Jodi DeRoo

I will give more details about her aorta in some of the following posts :-) it is not an easy one to explain.

a short update

2009-02-13T19:02:00.002-05:00

So, here it is a short little update about Amari. Yes, he is finally moving in here on Monday AM. This is 1 month after the first phone call. God is so amazing! It all seems to be coming together now. God has moved mountains! It is not in the greatness of my faith, but the greatness of our God! He is amazing! More to come.....

it has been a while...

2009-02-10T21:39:00.003-05:00

Well, it has been a while since I have sat down and had time to put some of my thoughts and progress on life on here. Once again it is time. I have been busy at work getting all of our stuff done for becoming foster parents. As most of you know it is a process to say the least just because of all the paper work that comes with having one of these little ones put into your home. I have to say that I am grateful for the process though just to protect them as they transition from one home to another. Although when we are on the receiving end of a baby it seems long when really it has been less than a month since we got "the call". I am extremely amazed at God provision in this. I am not one to be shocked by Him because He has shown so much of Himself to us through life and just recently through Kasi's surgery. Now here we are and I am just so full of joy I feel like I could explode.
One thing you don't know is that the month of Jan. I thought I was pregnant. Not because of any "real" signs, but because my body and mind were going crazy with this thought. Some of you don't know that Ron and I have secondary infertility in which we could not get pregnant, with no explanation. In the last 10 years we have had only 2 pregnancies and both were ectopic. (tubal) The first they used chemo to dissolve and I was on bed rest for about 2 months and the second I ended up in emergency surgery because I was bleeding, which means my tube was getting stretched and could burst. Long story short I had to have my right side removed.
Okay with that said, you know how crazy it was for me to have these feelings in Jan. I only told my very best friend, Kristie, this and she went through this with me. Talking me through this and then she was on her knees and thought, you know I think you are going to have a baby too. I then thought we were both crazy and I went into the Dr. to have my blood drawn just to make sure. I couldn't risk another ectopic. I went in and it was negative. I was kind of defeated, but not really. I thought it was just God's way of saying you don't need to trust in that, trust in me. So, I did! I was already going crazy about Sept. about when I would be do and the way I would tell everyone after everything that we have been through. I was also excited for Ben to have a little sibling. All of those emotions. Well, on Jan. 12 my cycle began and I was crushed. I didn't understand and was throwing my arms up to Him because I was resolved to have only 3 kids! I cried and I cried with Kristie who continued to try and build me up, but was confused herself at why we thought we were so clear on this one. I never have thought that so strongly before and here it was SO strong.
That brings me to the fact of Amari was born on Jan. 12 and we got the call on the 15th that he would be moving into our family if we would have him. Now you know why our God is So awesome. I am just filled with joy and over-flowing! God had this planned! I remember talking to Ron and he was excited and said we just lost our den. And then I called Kristie, my words to her were this, we are so STUPID!
How can we ever know or begin to understand our God who is bigger than our everything. I don't have to wait until Sept. I might not even have to wait 1 month. That is unheard of. Only God can do something so much bigger than us. There are not words to even describe this.
So, where are we in the process. I am happy to say that we have met him. Last Friday we did spend our first 2 hours with him. I am also happy to say that his foster parents love him very much. This is great for Amari, but not so great for them. They were hoping to adopt him as well and when they found us with his brother they were kind of crushed. Okay, really crushed! My heart goes out to them and all foster parents! We pray for them and Amari all of the time. That the last few days be precious for them and that God will give them peace. At the same time because of all of the love they have for him it would be the best if he were placed here quickly. Just so they don't get any more attached. I would love it of you all could pray for Amari and the family. Also, know that their birth mom is out there hurting and trying to drown it ways that are not healthy. She has been living a life that is a circle that she feels she can't get out of. Yes, people choose this, but when people treat you as your life doesn't matter and tell you what they think you are worth you start to believe it. She has lived this way far to long to just walk away. So we pray for her safety and for warmth for her. We don't know if she has regular meals or a safe place to lay her head. I can't judge her....I am not in her shoes. All I know is that God has blessed us with these beautiful little boys that she has chose to give life to. Praise God for His hand in that as well and allowing us to be prayer warriors for her too!
God knows my name and I am humbled by that. Once again He has put me in a place where all there is is worship. Worship Him in and through everything. Our God is a GREAT God! He Reigns! In Heaven and on earth!
Bring the Good News!

Also, Kasi is still doing amazing! And....I got all the paper work done in less than a week and it usually takes 6 weeks to 2 months. God worked in every place of that too. More of those stories to come!

Some more info...

2009-01-22T10:54:00.002-05:00

Hello everyone! I just thought I would give you a little update.
First of all Kasi is doing great! Amazing! I didn't really expect anything different though. God has been so good to her and all of us through this process that we are living in His goodness everyday. The joy He has given can't ever be stolen. He just keeps adding to it daily. And through everything that we have in front of us we know "it will be okay". Always!
So the update on little Amari. He is a little more then 5 lbs now. He was born a little more than 6 lbs, but he had stomach surgery a couple of days ago. He is doing great and back at his foster home. He had pyloric stynosis, for those of you who know the medical stuff a little bit. I do know what this is because it is the very first surgery that Kasi had as a baby. Kasi's of course was a little more complicated and after Kasi had her surgery at 5 weeks she stopped breathing and such. That is when we found out about all of her heart stuff. Needless to say, Kasi wasn't out of the hospital for a long time after that surgery. The fact that Amari is back at the foster home means everything is great! I am happy about that. I know that even though we are not there to love on him, God is where Amari is and is loving him more than we ever could.
We will be able to meet Amari in about 2 weeks. There are things that have to take place with the courts first before we can start our meetings with him. I understand this too, and I know that it is a long process because we went through this with our little Ben too. It is okay though because it will be faster than in Ben's case. Ron and I are starting our foster licensing either today or tomorrow. We will be working on that for a bit, but we will be able to have Amari in our home before that is complete. That is exciting news for sure! We are praying that he will be with us within 2 months. So, here is the subject of prayer and praise. Praise because God is faithful. I know some people think we are crazy for doing this, but I am young yet! And the fact that this little guy was known by God before his existence means God knew where Amari needed to go as well. So, when God chose us for Ben, He chose us for Amari as well! We are His and these little ones are His too!
I would love it if you could pray for protection over Amari too! He will be with his birth mom for supervised visits. This is if she shows up. It would be good for all of us if she didn't show up. It would just make things move along faster, but Christina needs prayers too. Pray for her mind to be open and for her to realize that the best thing for Amari is to be with his brother. If she does that, everything would be over quickly. Right now she is contesting Amari being taken from her. She is not saying she is going to change, she is just saying "I want my baby". God is good and in the middle of it all. Pray, Pray and pray some more. Where ever God leads you in this case!
I think that is all for now! We are looking forward to a new little one here soon! We are going to be painting and moving furniture around! We are in need of a new born car seat. This is our first real need! It has to be less than 5 years old, really 4 because we are going to be using it for the next year.
Have a great day! Thank you for reading this and praying with us! Celebrate who God is! Be AMAZED!!!

Wow

2009-01-19T15:35:00.002-05:00

What a crazy title for a blog post, but there is nothing more to say. There really aren't words enough to explain the joy that we are experiencing here at our home. God is faithful!
I will start with Kasi and her Dr.'s appointment today.
Kasi had her Dr.'s appointment this morning right away so she had to get up like a normal 12 year old. Bummer! She wasn't excited about that, but the news we received made it all worth while. The Dr. took X-rays of her back and came in the room full of smiles. He looked at Kasi and said, "Are you ready to go back to school?" We both looked at him and said "are you serious?". Yes he sure is! He showed us the X-rays of her back and it looks amazing. His words are she is doing spectacular! Praise God!!! He is astonished, and amazed as well. This is an awesome thing because when stuff like that happens it is ONLY God. And that is who we can point to for all of her progress. Kasi and I talked about how awesome it is that we are not in control of our own lives. We sure would miss out on the blessings of seeing Him do "immeasurably more than we could ever think or imagine". We are so excited. And Kasi will be going to school tomorrow.
Since this blog is called our journey in faith, I think I might start the next part of our journey as well. You see God is always working as we all know and the places He works in sometimes catches us by complete surprise. That is exactly what He has done.....again!
There is a long history to tell you about with our little guy Ben and at this time I am not going to put all of that in. I will do that because it is an amazing story, but for now we need prayers and celebration at the fact that Ben's birth mom chose life again! She had another baby boy on Jan. 12. We don't know many details, but we do know that Amari was taken at birth and went from the hospital to a foster home. We received a call on Friday at 2:00 in the afternoon and the case worker said they really like to keep siblings together. We have to agree! So, the DeRoo's are growing again! It is amazing to think that God, when He gave us Ben, already knew He was giving us this little one too. Now the prayers that I am asking for are two fold. You see we have met their birth mom. Her name is Christina and she is lost. She doesn't know love or the love of God. When I see her all I can do is hold her and cry. Which is what I have done with her a few times in the past. We have not seen her since Feb. 14, 2007. We know that she is making the same decisions as she has in the past and that is why Amari too will need a safe place to live. We pray for her and we pray for Amari. For Amari, that the transition will happen quickly and for him to be loved on by the family God is giving him to. For our family as we wait to hear how long and what we will need to do for all of this to happen. We have no idea what the time frame looks like. We also have no idea what the cost might be. I know God will provide so we will walk in faith during this next step in our journey.
Thank you for all of your prayers and if you have any words of Truth that God might have for us, please share!
How amazing is our God! I will share the even more amazing parts to come! I am speechless....but I do have something to say. God IS! the I am!!!

One month has gone by....

2009-01-12T11:30:00.003-05:00

I can't believe it is Jan. 12 already. The past month has flown by with time continuing to go by swiftly. I have to say the days are busier with Kasi not being in school. I get to set her up for come classes and do homework at other times during the day. She does help around here once in a while which is nice, but she can't do much. Just fold laundry really.
Her hands and feet still turn color, but I am just letting it go until her next Dr. appointment which will be next week.
Her spirits are up, although she would love to go out and go snowmobiling. That is out of the question for this year.
We play a lot of games here and that helps pass the time. She also got alot of "stuff" to do from all sorts of people so she keeps busy with all of that. She is working on making a book and scrap booking some pictures.
Kasi is starting to eat a little better too. She is not keeping up with Aubree though and believe it or not I think Aubree has had another growth spirt so she might be taller once again. I am not sure who will end up winning the battle of height. I do know that I have them both by at least 4 or 5 inches. That is the way it is supposed to be :-)
Kasi's back looks great too! Her incision has healed up nicely. It does feel funny being out of her brace and that only takes place when she takes a shower. She is very cautious when she gets in and out. I help her of course.
I think that is it for now! I am praying for her actual fusion to exceed everything that the Dr.s expect. It would be awesome for her to start having a little freedom back. We will see, next week!
Thank you all for your prayers! God is an awesome God.....don't ever forget!
Jodi

This Week---Kasi again:-)

2009-01-06T17:24:00.004-05:00

Hey its me again!! Well, many of you thought I started school on Monday because something still needed to be done to a few class rooms for wireless so I didn't start school. Which I think it is ok because then I kind of get a little break before I start. Hopefully everything will be done tomorrow if not by the end of this week! Also my feet and hands turned really purple today and they hurt so badly. I told my mom that I needed to sit down there and now. Well, thank you for your thoughts and prayers!
Love all of you lots!
Kasi

It's me Kasi!

2009-01-04T20:47:00.002-05:00

First of all hi to everyone! Well first of all I "start" school tomorrow! I'm so excited! Also alot of you ask me about my hands and feet. Well they do hurt. They especially hurt when they turn really purple. Normally they turn purple when i stand up for a long period of time and put alot of pressure on them. I also wanted to say thank you for your thoughts and prayers. They have helped alot and you may not know it but I "feel" them.
love all of you so much,
kasi

Jan. 1 2009

2009-01-01T23:47:00.002-05:00

First...Happy New Year to all of you. It is great to look back at the past year and see God's hand in our lives. I am so thankful for all the many blessings He has given me!
This is just a quick update. Last time I wrote it was about Kasi's feet and legs. I did call her cardiologist and he wanted to see us first thing the next morning. We were there and they actually got there a little early to see us which was nice, no wait :-) Dr. Malcolm did a EKG and took her blood pressures. They were a little high, but not so bad. Then they did an ECO, all of this is a normal appointment for her, just so you know. All of the results were the same as before the surgery. This is good because it means that her aorta has not narrowed any more than before the surgery. It also did not improve. He stressed the fact with us again that he has had many Dr.'s look at her case. Three from U of M and the specialist around here. They know that they cannot just go in and "fix" her aorta. They can't balloon it or do any of the "normal" techniques to fix her aorta. They would have to replace it and all the major vessels that flow off of her aorta. So, at this time we are going to watch and wait. He said her body is still adjusting to it's new form. I have to call him again at the end of next week to let him know if anything has changed.
I want you to know that Kasi has a hard time with this. I keep her down for most of the day and she only really walks around for brief time periods. Her hands are now getting purple as well, and today I was not the only one who saw it first hand. So did the family. This is not a normal just turn purple this is a yuck color and her face at times is grayish. I am not being funny about this. I made Kasi sit again for a while and she just cries. She is sick of it and her comment to me was...."Mom, you know it doesn't help. It just is what it is." I held her for a few minutes and she got herself put back together and went on. She knows it is not "normal" and I think she is just praying it goes away. That is what I am asking too. We have seen God work amazing things in her already and I am sure He won't stop now. I am just praying for His will once again to take place and for us to be all He wants us to be through this. It is a long haul and it is only 3 weeks out. We have a while to go and it is a life change for a bit. Pray for patience and understanding as we go through this. Understanding for Kasi as we MAKE her sit and rest. She still doesn't have pain so she thinks she is good to go. She is not!
Thank you for all of your prayers and continued support to our family!
We love you all!

Monday Dec. 29

2008-12-29T11:38:00.002-05:00

Good morning to all of you, although by the time you read this it might not be morning or the 29th anymore:-) I hope all of you had a great weekend!
This is just a little update for all of you because I know that you are all still praying faithfully for this long haul that we are part of.
Kasi last evening decided she was going to sleep in her own bed! This is a huge step because her bedroom in downstairs. We spent the day down stairs in front of the fireplace because we lost electric in the morning and we were out for a long time. Kasi practiced going up and down the steps a few times and her strength is getting better. This is a great thing and with an intercom in her room we felt she could do this! I was kind of excited myself to sleep in a bed for the first time in weeks! Yes, that did seem like a great idea. Well, she did get all tucked in and by 12:00 am she was upstairs back in my bed. Yep....so she tried at least and this is something we really need to work on. Finding something comfortable for her to sleep on. She tosses and turns all night and her bed has a memory foam top and well that doesn't work for her. So, I will be taking that off her bed today and hopefully that will be better for her tonight. It was nice to start out the night in good sleep at least, and for those who know me that was about 1/2 an hour because I am kind of a night person and didn't close me eyes until 11:30. What a great 1/2 hour it was though. =D
Her feet still bother her and she is getting headaches frequently. I am going to call her cardiologist right after I am done with this update. I will let you know what he says about this. It is a fine line between something to really get checked out and something that could be just her needing to get her strength back. She is a little peanut. Really skinny! So, I just bought some calcium and vitamins to help her with her healing since she is not getting enough through what she eats.
We have a relaxing week planned this week which will be good for her. Nothing really to push her into at this time. Yesterday she was pretty sick of just sitting around and was almost crying she was so sick of it. Just a bla type of day so I am praying her spirits stay up and she has patience to endure the long haul.
I think that is all for now! I love all the prayers that are offered on her behalf. God is so amazing and I don't think I can stress enough the blessings He is giving her and us daily. No pain.....NONE...still! She is an amazing girl and when I started out saying that one He could love her more, that is evident in everything that He gives her. Makes my heart beam to know she is held by Him. We praise Him today and everyday....Thank you Jesus!!!

Christmas

2008-12-26T12:40:00.002-05:00

Here it is Dec. 26th and it seems like we were anticipating Christmas this year for such a long time. We really didn't know what it would be like for our family considering Kasi having her surgery and such. Well, now we know how blessed we truly are to have a God that knows us and loves us more then we could ever imagine. I am amazed at her strength through the past days and her change of heart. Kasi is my very strong willed child, as some of you know, and some of you think is funny! She defines strong will. Once again, I have no idea where she gets that stuff from :-) Kasi says to me how different she feels and how nice it is. She can tell she different on the inside as well as the outside. She corrects herself when she doesn't talk respectfully and she is always looking out for those around her. Kasi has so much joy she can't even contain it. She has always had a compassionate heart, but she is showing it all around her now and is not hiding her heart at all. I love this about her. Her prayers have even changed! I think I have mentioned this before, but Kasi has a unique relationship with our Heavenly Father. I can't wait to see what He has planned for her, and you know, His plans are unfolding even as a 12 year old. She is an example to us all.
We had a great Christmas over here. Kasi was strong all day. She did get tired and her feet hurt big time. But she laid down when she needed to and we up playing games at other times. She is a blessing to have around and she is taking one day at a time!
I just want to tell you all too that we appreciate all of your prayers. All of you!!! I don't even know how to express my thankfulness. When God's people come together in prayer incredible things happen. It has been evident in her life before and we where reminded of it once again through all of this. She still has a long road of patience and her heart is not perfect, but we know that in all things God works for the good of those who love Him. She loves Him and that is what we find our rest in.
Have a great Holy-day season! Keep looking up! I will write more later......

Christmas party day!

2008-12-23T16:30:00.002-05:00

We had another busy day today. We are doing good with getting everything in. Even if it is just a little bit here and there. Kasi went to her Christmas party at school today and was there for about 2 hours. This was great for her. She is whipped now, but she had a great time. It is so nice to see her friends come along side her and encourage her. I love the support she gets from teachers and kids, it is truly a blessing. I know that she is prayed for and covered continually in prayer and that is a great feeling as a mom. She feels it and knows it too. She is smiling more than ever before and that was a lot. Her heart, not physical, has grown to see people with compassion and grace. She is showing love and tenderness around home to everyone and to those she comes into contact with. Kasi has looked up every verse everyone has given her and has read and re-read some of her own favorites. She knows God is holding her, and this is different than what I can explain. She has a knowledge of Him that is very personal. She has felt His hand on her before in the physical sense in a couple of different situations and I know she feels His presence now. For her it is a no brainer...I wish I could be more like her in that. When God talks about the faith of a child, I get that. Watch Kasi, and you will too. I sometimes wondered if she was in denial of everything she had/has to go through, and you know it is never denial. She sheds her tears and understands the road she has to walk, but she continues on with a smile because she KNOWS God and KNOWS He is walking with her. It gives me peace to know this as well.
I know some are asking about her heart. All I can say at this point is that I really don't know. We are waiting for an appointment in the early spring, so March, for them to really take a look at what is happening inside her. I am almost to a point though in moving her appointment up because she does have pain in her feet. Now this could be normal because she is down so much, but I also know it is a symptom of her aorta being narrowed. When I give her a shower her feet turn purple, almost black, and she complains because they hurt. If this continues after Christmas I will make and appointment with her cardiologist. So that is something to pray for. Her feet and legs to not have pain and good circulation through them. Mostly, for her aorta to be healed. That would be the greatest gift ever. If she could be free from Doctors appointments and tests that would be a great blessing!
Thank you for all of your thoughts, kind words, cards, verses, and mostly Prayers. God is listening and answering and we Praise Him continually for all His many Blessings. We find them in each day!

Still snowing

2008-12-22T15:41:00.002-05:00

It is still snowing outside here. How much snow are we going to get before this is all done! I am not sure....little help here Terri???
We made it out today to get to Kasi's appointment. It was nice to hear that not only do I think she is doing good, but they do too. She is doing great actually! She doesn't take any pain meds even to "stay ahead" of pain as they told us to do at the hospital. I do give her a muscle relaxer before she goes to bed at night. This is to help with muscle spasms. Her back looks great and she has officially gained 1.5 inches. Yay! She doesn't really care how many inches she has gained, just as long as she is taller than Aubree. I know that if she were to start eating she would have a better chance at growing too! I am still working on that with her. She is eating healthy and such, but just not much. We do many "meals" through out the day. This seems to work the best for her. After her Dr. appt. she was very tired and we stopped for some good french fries at McDonald's. What a good mom! I know, not healthy. But she could use a little fat.=D
We were told at her appointment all of the stuff she could do. This was easier than all the stuff she can't do. So the list of dos is this:
1. Walk
2. Walk
3. Walk
And so forth. This is all she can do. She may sit for a while in a comfy chair, but no desks, hard chairs, or anything straight up for more than 20 mins. We have our next appointment is in Jan. and we will see if she is able to do more by then. As for now, nothing! She gets tired sitting up for long periods of time, and I guess that is typical. She did just have major surgery.
Tomorrow is a big day at school and she is wanting to go to her Christmas party. We will see, I am not sure yet and we have to see her energy level. Right now we are getting dumped on with snow once again. I am thinking we are going to need a ride to even get in! If only we had 2 4-wheel drive vehicles!
I hope all of you are traveling safely! I know the farther away from the lake the better. Unfortunately we are right in the lake effect snow belt. It is great for snowmobiling :-)

1 week 2 days

2008-12-21T17:10:00.002-05:00

It is hard to believe it is 9 days past surgery already. The time has flown by and I hope that the next few months go as fast. I am sure looking back everything will have seemed to fly, but in the middle of it, it will seem to take forever. Especially for Kasi.
Today has been a day of more movies and games. Not many games by the table though, Kasi is really sore from yesterday. Her upper back and shoulders today. I am thinking it is because she decided yesterday to try and get up by herself. She doesn't have patience and well I have other things I am doing at times. Put the two together and then you have Kasi standing in the kitchen and she got there all by herself. I wish I knew what was okay for her to do and what wasn't. I would say I will find out tomorrow, but with the weather like it is there is no way I will be able to get out. Aubree is happy about that because she doesn't want school tomorrow. I can't imagine that she will have it, it is awful out there! We will see though.
We didn't do the shower thing today yet. I think that will be just before bed. It is such a hard thing for her. Her legs and feet get all purple and she gets really dizzy. I have to wash as fast as I can, and be gentle.
It seems like it has been a full day already, but it is only 5:15. Being cooped up is not my favorite thing, so I actually think I am going to go and shovel some snow. =D I know that sounds a little nuts maybe, but for me....anything to be outside!
Over all we have had a pretty good day. We didn't have church which was a bummer and I think the Christmas party was cancelled too. So, we shall watch this winter unfold from the nice warm room and maybe even get Kasi downstairs to sit in front of the fire. My favorite place to be on nights like these!

comments

2008-12-20T19:43:00.001-05:00

Also one more thing....I think that I fixed the settings so you can all comment easier. I hope it works! Kasi loves to hear from you all! I love to hear how people are praying too!
Jodi

a good day...

2008-12-20T19:11:00.002-05:00

It is the end of a long, but good day. 7:10 actually and at one point in life I would think the day has just begun. Not so much anymore. It is funny what 3 kids and some years on life does to that.
Kasi was "Kasi-sat" today for the first time. Yep, her cousins and Aunt Deb came over to spend some time with her and that freed me up to go to Aubree's 2 soccer games. In which she tied and her coach was satisfied with their play, but her mom was not. Funny! For those of you who know me well can imagine I am sure. :-) It was nice to get out of the house! It was one on one time with Aub too which made it twice as nice. We needed that.
As for Ben, he is feeling better. No fever today which is a blessing and he seems to have some energy back. Although he did have to take a nap today, which he doesn't do. It was good for him, I just hope he goes to bed on time tonight!
I have realized by the reaction on people that see Kasi that everyone who reads this is understanding the miracle in her. The fact that she is still without pain is amazing! There are two reasons for that I am convinced. First and foremost....GOD! He has freed her from pain. This is not just something that has happened for this particular moment, but has been Kasi's life. With all of her surgeries and procedures you know I don't ever remember her complaining of pain. When she was a baby and had her first heart surgery they gave her morphine and she stopped breathing. Of course they took her off right away, but they gave her Tylenol after that. I am not sure if she needed it because she really didn't show signs of pain even then. She would get "uncomfortable" which she complains about now once in a while, but never did she really cry. What an amazing God we have to build her in such a way that she doesn't really feel pain. Or has such a high pain tolerance that it really doesn't register as pain to her. That is my explanations for that. Either which way you look at it, it is simply God's hand at work in her life. In the past, present, and we know in the future as well.
Kasi right now is tired from a long day and going to be sleeping in a couple of hours I am sure. Although her sleep is not for a full night yet, it is peaceful when she is sleeping.
I hear some questions here and there about her and her progress because of something I may have written on past days. If you have any questions about her, please just comment and I will answer as many as I have answers for. I know the big one is, "how tall is she?" We will find out Monday, but we do know she is taller than Aubree and not as tall as me. =D
As for her eating and such, she does eat, just not much. What she does eat is healthy so we keep feeding that to her. She seems to want a lot of apples! This is good because we have a lot!
Please keep praying for strength in her and for her to stay healthy. We are also continuing prayers for her heart. Her heart Dr. will do the big check up in a couple of months when her body has recovered from surgery.
She is also very stir crazy. She doesn't have much sit in her, I have no idea where she got that from either, hummm. She knows she has to lie low, but it is hard for her to do this all of the time. She does get up and play games and such, but is very tired after a few hours of that. No she doesn't sit the whole time, she sits then walks and sits and walks....you get the idea. Her balance is coming along very nice too. At first it was a new experience to stand up straight. She has that down now which is great, now I have to get her to walk straight up instead of leaning forward. Something else to get used to. Strength, strength, strength.....that is what she needs!
I think that is all for now. I am going to go and join them in "movie time"! I think Hairspray is the movie of choice tonight.
Have a great evening! Thank you for your continued prayers and your walk with us in this journey. You can see how God is answering all of our prayers together. What a blessing! I am truly blessed!
We Praise you Father.......today and always.

The end of a snow day!

2008-12-19T18:27:00.002-05:00

So what a way to start the day today. As I have mentioned before that Ben has been sick, well I didn't mention that he is a little spoiled as well. He is used to having all of mommy's attention during the day and then when you add breathing treatments and fevers on top of it, I have pretty much been expired before 8 am this morning. I called Ron and he came home from work to help out around here a little bit and it was a good thing. Kasi had to have a shower again and with Ben's energy after breathing treatments it was a little crazy over here. Not to mention the fact that Kasi didn't sleep good at all last night and we woke up several times and then Ben decided that 5 am was a great time to get up and cough and cough. That was the first breathing treatment of the day. It has been a day to say the least! Then you have Aubree, poor Aub getting the shaft on any attention. I have been going out of my way to have conversations with her and spend time with her too. We had movie time in which I only got up a couple of times to take care of "things", but for the most part sat....kindda!
I am thinking Ben is getting over the "hump" of being sick which is a blessing! Now if Kasi could sleep through the night and I could sleep in a real bed, that would be great. I am not complaining, but just praying!
Kasi's progress is about the same as yesterday. She is getting sick of being in bed all of the time. Aubree, Kasi, and I played a game by the table today for a bit. It was nice to get her out of bed. The shower felt great too, but getting her dressing changed didn't feel good at all. If you want to hear her really complain, that is when it happens. She knows that we have no choice and just takes deep breaths. She laid in bed today without her brace. She feels very weak without it and that is a little weird for her. She really prefers to keep it on. I wish we could do some exercises to help give her strength, you know me!!! And if you don't exercise is huge! I know it is a little early for that. I don't know if I mentioned this at all, but PT never came to see us at the hospital. They were supposed to come down a few days in a row, but I never saw them. Then when they said we could go home, we didn't wait for them. Monday is her first appointment so we will see what we can do then. I think that is all for now. We are closing this day down with some movies and such. It was hard watching kids from the neighborhood all go out with their sleds. Kasi loves to go sledding! I am glad she got some in before this big surgery.
I am loving the snow and all the reminders with it! God is good and pure! This is the day that the Lord has made, I will rejoice and be glad in it. Even if it has been challenging :-)

What a day!

2008-12-18T16:19:00.001-05:00

Here I am taking a little break from the busyness of the day. It seems as if each day God just fills us with more and more smiles. Kasi has been walking around today a lot. She is getting a little stir crazy. It seems funny to see her walking so soon and with no pain. Yep, no pain....still! God is an amazing God! She is starting to get into bed by herself, but I still have to help her out. I am not sure when that will change, but one step at a time. Kasi made a little card, but didn't finish it because she got a little tired. We are getting ready to eat our first meal together at the table. She can sit for about 20 mins so we will have to eat fast, but it will be nice to eat together.
I gave her a break from a shower today. It was pretty exhausting yesterday for her so we will do that tomorrow once again and then she can sleep all day. I keep cleaning and cleaning until Ben is done coughing. And then I will start doing the big clean once a day instead of 3 times.
Our first Dr. appointment is Monday already. They are going to check out her back and see how she is doing. It will be nice to share all the progress Kasi is making with them. I am wondering if they have to keep the restricts on though. Pretty sure they will have to. It is all about her back fusing now. I wish we could hurry up that process too. Yep that is me.....hurry up already :-)
I think that is all for now. She has a really good day! She played the piano too for a bit. Just some nice Christmas music. It is nice to hear the music again!
As I write this she is resting peacefully. What a day we had! Thank you God once again for your blessing of life! And for your strength!
Thank you for all your encouragement through that comments you make. I know some of you are having a hard time commenting. I don't know why, it is free, but you know computers! I know that you are all praying! Thank you for those!

here is a picture!

2008-12-17T20:56:00.005-05:00

Here is a picture of Kasi's back. Notice how straight it is and not one "hump" at all!

Praise God!

You can see that there is a lot of healing to do too! Underneath this there are 2 rods and many screws, not to mention the bone fusion! Wow, Kasi you are an amazing girl of strength. I definitely know where your strength comes from! I will Praise Him with you!

we are home

2008-12-17T17:32:00.002-05:00

Here I am at the end, well it is only 5:30 pm, but it feels like the end of a long first day at home. Kasi is doing great and resting a lot. This is good for her little body to get better. I gave her a shower today, and she saw her back today for the first time. It was kind of shocking for her. She now understands the miracle in having no pain and only discomfort.
So, today we have begun to live our new "normal" life. Ben is sick and wants his mommy and at the same time Kasi needs hers. It is a crazy time sometimes between changing my shirt so the one I had on with Ben isn't close to Kasi and spraying Lysol in all the rooms. My Clorox wipes have become my friend and I love the new soft-scrub spray with bleach. Hand sanitizer is on the counters as well as anti-bacterial soap at every sink. Dial has become the soap in every shower and bath as well. Sounds a little nuts, but I would hate for Kasi to get sick. Her body has been run down with surgery and her heart is the first place that anything would or could go. So we are thankful that the sickness has stayed away from her and we will continue to pray against any germs that might think about entering her room. (well our room until yesterday! Now my bed has become a lazy-boy next to the bed)
It has been a long day already like I said before and it will be the first of many long days. Our journey, although a big part over, has really just begun. She has a long road of recovery and just sitting/lying around. 3-6 months worth! After Christmas school will begin at home with me being her main teacher. She will be doing classes online with the video cam and I will be helping her at home with the stuff she has to get done. This will be a challenge for us too, especially with Ben running around. He is a blessing! A very busy blessing! We will go forward in God's grace as we have this past weekend. Looking at how amazing He has been helps me go forward in Joy knowing He is with us every step we take.
I keep praying for a quick healing for Kasi and for her back to fuse great! It's funny today she went to get something out of the cupboard and she said it was weird because she didn't have to reach. She is taller!!!!
I am also praying for patience, I know be careful what you pray for. I know what I need to grow in and this is exactly how God likes to teach me to lean on Him. When He is all there is! And really that is true for everyone in every circumstance. He is our everything, we can ignore Him or acknowledge Him. I am finding Joy in acknowledging Him and His work everyday! Thank you God for your love and continued blessing on my life!
I will blog again soon!

Home

2008-12-16T09:41:00.002-05:00

Hi to all once again! This is Jodi again and well I am not on any muscle relaxers like Kasi is so hopefully this makes a little more sense. I know what she was talking about in her post though and I think you can figure it out as well. She is funny and rolls her eyes at me once in a while. For all those that know me, well the quicker we get out of here the better! So the patience in me is not good. This is normal :-)
This is a little later than my normal update, but that is because it has been a busy morning in here already. Starting at 6:30 when her Dr. came in until now. Dr. Russo came in and looked her over and said she looks great! Of course this is something we already knew. He then took out her drain, Yeah! Her incision looks great, he changed the dressing on that and said she has one more thing to do and we are outta here!!! Yep we are coming home today! Amazing, yes she is.
Today I ask all of you who are faithfully praying for her to continue and pray for the one specific thing she has to do today, which if I told you she would be mad so God knows....:-) And the other thing that I would love for you to join me is praise. Praise Him for His blessings of Peace, Comfort, and Healing. Yes they are caps because they are who God is and they are what He has given of Himself in abundance. Thank you Father for giving us everything more than we could ever thing or imagine!
I think that is all for now. The next time I update will be at home :-)
Blessing to you all!
And Praise God from whom all those Blessings flow!
To God be all the glory!

Jodi

Ok so as I wrote this the one thing she had to do....she just did! God is soooo good! He hears the prayers that are even unspoken! See you at home!

hey it is me kasi

2008-12-15T16:27:00.003-05:00

hey to all, my back is a little sore but i was walking a little bit. ( to the bathroom and back) lol. i tried to sat in a chair but that doesn't feel good. anyway i have alot of books to read and movies to watch. but today i was going to watch a vidio all i saw was the previews and the creadits. it was a great movie....lol....! i just also got my iv out last one so i'm little more free than i was so that is good. well an other story is my thought she could unpluge something. i told her no but she had to and there she it went the alarm went off and all it got was louder and louder. it was funny. anyway i wanted to say hi and thankyou for your thoughts and prayers.
love you all very much,
kasi

Morning day 4

2008-12-15T07:48:00.002-05:00

Hi to all! It is Monday morning at 7:45 am. Kasi is doing well this morning! She had the best night sleep so far. That was nice for both of us. She did get put back on oxygen last night because her numbers dropped a bit, but with a little help she slept like a baby. Dr. Russo has been in already this morning and likes the progress she has made so far. He did say that her drain needs to stay in one more day at least because she is still draining too much to take it out.
As for Kasi's comfort. She doesn't really have the pain from her actual surgery as much as from her brace. The edge at the top of her brace come across her incision and that is painful. They will be calling Mary Free Bed to see if they can fix that today. But she has to keep it on at all times. This brace she can even shower in. It is a little harder to get into too. We will get better at it each day I am sure.
Last night I helped Kasi stand up for a bit and she looked at me and said, "I am taller". Yes she is! This is the first thing we will do once she can walk, measure her. :-)

I think that is all for now! God is healing her up and she is doing really well! She is on the floor now so she can talk on the phone and such. She also has been on the computer as a lot of you know already!

Thank you for your faithfulness in praying. She is a testimony to God's amazing power and what He does when His people pray.

something quick

2008-12-14T19:43:00.002-05:00

Well we all know how amazing our God is! I just thought I would let you know that Kasi is on the floor already and in zero, yep zero pain! He provided blood that gave her strength and she has not needed anything since! Seriously the nurses are all amazed....God is an awesome God! He knows our bodies and takes care of them better than anyone else ever could. Praise Him! I am looking at her in awe....one more thing....the surgery Kasi had is one of the most painful surgeries you can have. Just so you know. :-)
I am beaming.....good night!