Merry Christmas!!

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

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

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!

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!

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

numbers up....

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??

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...

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

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

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!

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!

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

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

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....

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

Day 20

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....

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

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

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

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??

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.

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

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

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

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

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

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

Friday...day 10

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!

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.

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

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!