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!!
Friday, December 24, 2010
Thursday, December 16, 2010
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!
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!
Tuesday, December 14, 2010
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!
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!
Friday, December 10, 2010
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!
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!
Thursday, December 9, 2010
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!!
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!!
Tuesday, December 7, 2010
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!
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!
Monday, December 6, 2010
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)
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)
Sunday, December 5, 2010
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!!
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!!
Friday, December 3, 2010
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!
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!
Wednesday, December 1, 2010
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!
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!
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