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!!
Thursday, December 9, 2010
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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