Good morning to all of you, although by the time you read this it might not be morning or the 29th anymore:-) I hope all of you had a great weekend!
This is just a little update for all of you because I know that you are all still praying faithfully for this long haul that we are part of.
Kasi last evening decided she was going to sleep in her own bed! This is a huge step because her bedroom in downstairs. We spent the day down stairs in front of the fireplace because we lost electric in the morning and we were out for a long time. Kasi practiced going up and down the steps a few times and her strength is getting better. This is a great thing and with an intercom in her room we felt she could do this! I was kind of excited myself to sleep in a bed for the first time in weeks! Yes, that did seem like a great idea. Well, she did get all tucked in and by 12:00 am she was upstairs back in my bed. Yep....so she tried at least and this is something we really need to work on. Finding something comfortable for her to sleep on. She tosses and turns all night and her bed has a memory foam top and well that doesn't work for her. So, I will be taking that off her bed today and hopefully that will be better for her tonight. It was nice to start out the night in good sleep at least, and for those who know me that was about 1/2 an hour because I am kind of a night person and didn't close me eyes until 11:30. What a great 1/2 hour it was though. =D
Her feet still bother her and she is getting headaches frequently. I am going to call her cardiologist right after I am done with this update. I will let you know what he says about this. It is a fine line between something to really get checked out and something that could be just her needing to get her strength back. She is a little peanut. Really skinny! So, I just bought some calcium and vitamins to help her with her healing since she is not getting enough through what she eats.
We have a relaxing week planned this week which will be good for her. Nothing really to push her into at this time. Yesterday she was pretty sick of just sitting around and was almost crying she was so sick of it. Just a bla type of day so I am praying her spirits stay up and she has patience to endure the long haul.
I think that is all for now! I love all the prayers that are offered on her behalf. God is so amazing and I don't think I can stress enough the blessings He is giving her and us daily. No pain.....NONE...still! She is an amazing girl and when I started out saying that one He could love her more, that is evident in everything that He gives her. Makes my heart beam to know she is held by Him. We praise Him today and everyday....Thank you Jesus!!!
Monday, December 29, 2008
Friday, December 26, 2008
Christmas
Here it is Dec. 26th and it seems like we were anticipating Christmas this year for such a long time. We really didn't know what it would be like for our family considering Kasi having her surgery and such. Well, now we know how blessed we truly are to have a God that knows us and loves us more then we could ever imagine. I am amazed at her strength through the past days and her change of heart. Kasi is my very strong willed child, as some of you know, and some of you think is funny! She defines strong will. Once again, I have no idea where she gets that stuff from :-) Kasi says to me how different she feels and how nice it is. She can tell she different on the inside as well as the outside. She corrects herself when she doesn't talk respectfully and she is always looking out for those around her. Kasi has so much joy she can't even contain it. She has always had a compassionate heart, but she is showing it all around her now and is not hiding her heart at all. I love this about her. Her prayers have even changed! I think I have mentioned this before, but Kasi has a unique relationship with our Heavenly Father. I can't wait to see what He has planned for her, and you know, His plans are unfolding even as a 12 year old. She is an example to us all.
We had a great Christmas over here. Kasi was strong all day. She did get tired and her feet hurt big time. But she laid down when she needed to and we up playing games at other times. She is a blessing to have around and she is taking one day at a time!
I just want to tell you all too that we appreciate all of your prayers. All of you!!! I don't even know how to express my thankfulness. When God's people come together in prayer incredible things happen. It has been evident in her life before and we where reminded of it once again through all of this. She still has a long road of patience and her heart is not perfect, but we know that in all things God works for the good of those who love Him. She loves Him and that is what we find our rest in.
Have a great Holy-day season! Keep looking up! I will write more later......
We had a great Christmas over here. Kasi was strong all day. She did get tired and her feet hurt big time. But she laid down when she needed to and we up playing games at other times. She is a blessing to have around and she is taking one day at a time!
I just want to tell you all too that we appreciate all of your prayers. All of you!!! I don't even know how to express my thankfulness. When God's people come together in prayer incredible things happen. It has been evident in her life before and we where reminded of it once again through all of this. She still has a long road of patience and her heart is not perfect, but we know that in all things God works for the good of those who love Him. She loves Him and that is what we find our rest in.
Have a great Holy-day season! Keep looking up! I will write more later......
Tuesday, December 23, 2008
Christmas party day!
We had another busy day today. We are doing good with getting everything in. Even if it is just a little bit here and there. Kasi went to her Christmas party at school today and was there for about 2 hours. This was great for her. She is whipped now, but she had a great time. It is so nice to see her friends come along side her and encourage her. I love the support she gets from teachers and kids, it is truly a blessing. I know that she is prayed for and covered continually in prayer and that is a great feeling as a mom. She feels it and knows it too. She is smiling more than ever before and that was a lot. Her heart, not physical, has grown to see people with compassion and grace. She is showing love and tenderness around home to everyone and to those she comes into contact with. Kasi has looked up every verse everyone has given her and has read and re-read some of her own favorites. She knows God is holding her, and this is different than what I can explain. She has a knowledge of Him that is very personal. She has felt His hand on her before in the physical sense in a couple of different situations and I know she feels His presence now. For her it is a no brainer...I wish I could be more like her in that. When God talks about the faith of a child, I get that. Watch Kasi, and you will too. I sometimes wondered if she was in denial of everything she had/has to go through, and you know it is never denial. She sheds her tears and understands the road she has to walk, but she continues on with a smile because she KNOWS God and KNOWS He is walking with her. It gives me peace to know this as well.
I know some are asking about her heart. All I can say at this point is that I really don't know. We are waiting for an appointment in the early spring, so March, for them to really take a look at what is happening inside her. I am almost to a point though in moving her appointment up because she does have pain in her feet. Now this could be normal because she is down so much, but I also know it is a symptom of her aorta being narrowed. When I give her a shower her feet turn purple, almost black, and she complains because they hurt. If this continues after Christmas I will make and appointment with her cardiologist. So that is something to pray for. Her feet and legs to not have pain and good circulation through them. Mostly, for her aorta to be healed. That would be the greatest gift ever. If she could be free from Doctors appointments and tests that would be a great blessing!
Thank you for all of your thoughts, kind words, cards, verses, and mostly Prayers. God is listening and answering and we Praise Him continually for all His many Blessings. We find them in each day!
I know some are asking about her heart. All I can say at this point is that I really don't know. We are waiting for an appointment in the early spring, so March, for them to really take a look at what is happening inside her. I am almost to a point though in moving her appointment up because she does have pain in her feet. Now this could be normal because she is down so much, but I also know it is a symptom of her aorta being narrowed. When I give her a shower her feet turn purple, almost black, and she complains because they hurt. If this continues after Christmas I will make and appointment with her cardiologist. So that is something to pray for. Her feet and legs to not have pain and good circulation through them. Mostly, for her aorta to be healed. That would be the greatest gift ever. If she could be free from Doctors appointments and tests that would be a great blessing!
Thank you for all of your thoughts, kind words, cards, verses, and mostly Prayers. God is listening and answering and we Praise Him continually for all His many Blessings. We find them in each day!
Monday, December 22, 2008
Still snowing
It is still snowing outside here. How much snow are we going to get before this is all done! I am not sure....little help here Terri???
We made it out today to get to Kasi's appointment. It was nice to hear that not only do I think she is doing good, but they do too. She is doing great actually! She doesn't take any pain meds even to "stay ahead" of pain as they told us to do at the hospital. I do give her a muscle relaxer before she goes to bed at night. This is to help with muscle spasms. Her back looks great and she has officially gained 1.5 inches. Yay! She doesn't really care how many inches she has gained, just as long as she is taller than Aubree. I know that if she were to start eating she would have a better chance at growing too! I am still working on that with her. She is eating healthy and such, but just not much. We do many "meals" through out the day. This seems to work the best for her. After her Dr. appt. she was very tired and we stopped for some good french fries at McDonald's. What a good mom! I know, not healthy. But she could use a little fat.=D
We were told at her appointment all of the stuff she could do. This was easier than all the stuff she can't do. So the list of dos is this:
1. Walk
2. Walk
3. Walk
And so forth. This is all she can do. She may sit for a while in a comfy chair, but no desks, hard chairs, or anything straight up for more than 20 mins. We have our next appointment is in Jan. and we will see if she is able to do more by then. As for now, nothing! She gets tired sitting up for long periods of time, and I guess that is typical. She did just have major surgery.
Tomorrow is a big day at school and she is wanting to go to her Christmas party. We will see, I am not sure yet and we have to see her energy level. Right now we are getting dumped on with snow once again. I am thinking we are going to need a ride to even get in! If only we had 2 4-wheel drive vehicles!
I hope all of you are traveling safely! I know the farther away from the lake the better. Unfortunately we are right in the lake effect snow belt. It is great for snowmobiling :-)
We made it out today to get to Kasi's appointment. It was nice to hear that not only do I think she is doing good, but they do too. She is doing great actually! She doesn't take any pain meds even to "stay ahead" of pain as they told us to do at the hospital. I do give her a muscle relaxer before she goes to bed at night. This is to help with muscle spasms. Her back looks great and she has officially gained 1.5 inches. Yay! She doesn't really care how many inches she has gained, just as long as she is taller than Aubree. I know that if she were to start eating she would have a better chance at growing too! I am still working on that with her. She is eating healthy and such, but just not much. We do many "meals" through out the day. This seems to work the best for her. After her Dr. appt. she was very tired and we stopped for some good french fries at McDonald's. What a good mom! I know, not healthy. But she could use a little fat.=D
We were told at her appointment all of the stuff she could do. This was easier than all the stuff she can't do. So the list of dos is this:
1. Walk
2. Walk
3. Walk
And so forth. This is all she can do. She may sit for a while in a comfy chair, but no desks, hard chairs, or anything straight up for more than 20 mins. We have our next appointment is in Jan. and we will see if she is able to do more by then. As for now, nothing! She gets tired sitting up for long periods of time, and I guess that is typical. She did just have major surgery.
Tomorrow is a big day at school and she is wanting to go to her Christmas party. We will see, I am not sure yet and we have to see her energy level. Right now we are getting dumped on with snow once again. I am thinking we are going to need a ride to even get in! If only we had 2 4-wheel drive vehicles!
I hope all of you are traveling safely! I know the farther away from the lake the better. Unfortunately we are right in the lake effect snow belt. It is great for snowmobiling :-)
Sunday, December 21, 2008
1 week 2 days
It is hard to believe it is 9 days past surgery already. The time has flown by and I hope that the next few months go as fast. I am sure looking back everything will have seemed to fly, but in the middle of it, it will seem to take forever. Especially for Kasi.
Today has been a day of more movies and games. Not many games by the table though, Kasi is really sore from yesterday. Her upper back and shoulders today. I am thinking it is because she decided yesterday to try and get up by herself. She doesn't have patience and well I have other things I am doing at times. Put the two together and then you have Kasi standing in the kitchen and she got there all by herself. I wish I knew what was okay for her to do and what wasn't. I would say I will find out tomorrow, but with the weather like it is there is no way I will be able to get out. Aubree is happy about that because she doesn't want school tomorrow. I can't imagine that she will have it, it is awful out there! We will see though.
We didn't do the shower thing today yet. I think that will be just before bed. It is such a hard thing for her. Her legs and feet get all purple and she gets really dizzy. I have to wash as fast as I can, and be gentle.
It seems like it has been a full day already, but it is only 5:15. Being cooped up is not my favorite thing, so I actually think I am going to go and shovel some snow. =D I know that sounds a little nuts maybe, but for me....anything to be outside!
Over all we have had a pretty good day. We didn't have church which was a bummer and I think the Christmas party was cancelled too. So, we shall watch this winter unfold from the nice warm room and maybe even get Kasi downstairs to sit in front of the fire. My favorite place to be on nights like these!
Today has been a day of more movies and games. Not many games by the table though, Kasi is really sore from yesterday. Her upper back and shoulders today. I am thinking it is because she decided yesterday to try and get up by herself. She doesn't have patience and well I have other things I am doing at times. Put the two together and then you have Kasi standing in the kitchen and she got there all by herself. I wish I knew what was okay for her to do and what wasn't. I would say I will find out tomorrow, but with the weather like it is there is no way I will be able to get out. Aubree is happy about that because she doesn't want school tomorrow. I can't imagine that she will have it, it is awful out there! We will see though.
We didn't do the shower thing today yet. I think that will be just before bed. It is such a hard thing for her. Her legs and feet get all purple and she gets really dizzy. I have to wash as fast as I can, and be gentle.
It seems like it has been a full day already, but it is only 5:15. Being cooped up is not my favorite thing, so I actually think I am going to go and shovel some snow. =D I know that sounds a little nuts maybe, but for me....anything to be outside!
Over all we have had a pretty good day. We didn't have church which was a bummer and I think the Christmas party was cancelled too. So, we shall watch this winter unfold from the nice warm room and maybe even get Kasi downstairs to sit in front of the fire. My favorite place to be on nights like these!
Saturday, December 20, 2008
comments
Also one more thing....I think that I fixed the settings so you can all comment easier. I hope it works! Kasi loves to hear from you all! I love to hear how people are praying too!
Jodi
Jodi
a good day...
It is the end of a long, but good day. 7:10 actually and at one point in life I would think the day has just begun. Not so much anymore. It is funny what 3 kids and some years on life does to that.
Kasi was "Kasi-sat" today for the first time. Yep, her cousins and Aunt Deb came over to spend some time with her and that freed me up to go to Aubree's 2 soccer games. In which she tied and her coach was satisfied with their play, but her mom was not. Funny! For those of you who know me well can imagine I am sure. :-) It was nice to get out of the house! It was one on one time with Aub too which made it twice as nice. We needed that.
As for Ben, he is feeling better. No fever today which is a blessing and he seems to have some energy back. Although he did have to take a nap today, which he doesn't do. It was good for him, I just hope he goes to bed on time tonight!
I have realized by the reaction on people that see Kasi that everyone who reads this is understanding the miracle in her. The fact that she is still without pain is amazing! There are two reasons for that I am convinced. First and foremost....GOD! He has freed her from pain. This is not just something that has happened for this particular moment, but has been Kasi's life. With all of her surgeries and procedures you know I don't ever remember her complaining of pain. When she was a baby and had her first heart surgery they gave her morphine and she stopped breathing. Of course they took her off right away, but they gave her Tylenol after that. I am not sure if she needed it because she really didn't show signs of pain even then. She would get "uncomfortable" which she complains about now once in a while, but never did she really cry. What an amazing God we have to build her in such a way that she doesn't really feel pain. Or has such a high pain tolerance that it really doesn't register as pain to her. That is my explanations for that. Either which way you look at it, it is simply God's hand at work in her life. In the past, present, and we know in the future as well.
Kasi right now is tired from a long day and going to be sleeping in a couple of hours I am sure. Although her sleep is not for a full night yet, it is peaceful when she is sleeping.
I hear some questions here and there about her and her progress because of something I may have written on past days. If you have any questions about her, please just comment and I will answer as many as I have answers for. I know the big one is, "how tall is she?" We will find out Monday, but we do know she is taller than Aubree and not as tall as me. =D
As for her eating and such, she does eat, just not much. What she does eat is healthy so we keep feeding that to her. She seems to want a lot of apples! This is good because we have a lot!
Please keep praying for strength in her and for her to stay healthy. We are also continuing prayers for her heart. Her heart Dr. will do the big check up in a couple of months when her body has recovered from surgery.
She is also very stir crazy. She doesn't have much sit in her, I have no idea where she got that from either, hummm. She knows she has to lie low, but it is hard for her to do this all of the time. She does get up and play games and such, but is very tired after a few hours of that. No she doesn't sit the whole time, she sits then walks and sits and walks....you get the idea. Her balance is coming along very nice too. At first it was a new experience to stand up straight. She has that down now which is great, now I have to get her to walk straight up instead of leaning forward. Something else to get used to. Strength, strength, strength.....that is what she needs!
I think that is all for now. I am going to go and join them in "movie time"! I think Hairspray is the movie of choice tonight.
Have a great evening! Thank you for your continued prayers and your walk with us in this journey. You can see how God is answering all of our prayers together. What a blessing! I am truly blessed!
We Praise you Father.......today and always.
Kasi was "Kasi-sat" today for the first time. Yep, her cousins and Aunt Deb came over to spend some time with her and that freed me up to go to Aubree's 2 soccer games. In which she tied and her coach was satisfied with their play, but her mom was not. Funny! For those of you who know me well can imagine I am sure. :-) It was nice to get out of the house! It was one on one time with Aub too which made it twice as nice. We needed that.
As for Ben, he is feeling better. No fever today which is a blessing and he seems to have some energy back. Although he did have to take a nap today, which he doesn't do. It was good for him, I just hope he goes to bed on time tonight!
I have realized by the reaction on people that see Kasi that everyone who reads this is understanding the miracle in her. The fact that she is still without pain is amazing! There are two reasons for that I am convinced. First and foremost....GOD! He has freed her from pain. This is not just something that has happened for this particular moment, but has been Kasi's life. With all of her surgeries and procedures you know I don't ever remember her complaining of pain. When she was a baby and had her first heart surgery they gave her morphine and she stopped breathing. Of course they took her off right away, but they gave her Tylenol after that. I am not sure if she needed it because she really didn't show signs of pain even then. She would get "uncomfortable" which she complains about now once in a while, but never did she really cry. What an amazing God we have to build her in such a way that she doesn't really feel pain. Or has such a high pain tolerance that it really doesn't register as pain to her. That is my explanations for that. Either which way you look at it, it is simply God's hand at work in her life. In the past, present, and we know in the future as well.
Kasi right now is tired from a long day and going to be sleeping in a couple of hours I am sure. Although her sleep is not for a full night yet, it is peaceful when she is sleeping.
I hear some questions here and there about her and her progress because of something I may have written on past days. If you have any questions about her, please just comment and I will answer as many as I have answers for. I know the big one is, "how tall is she?" We will find out Monday, but we do know she is taller than Aubree and not as tall as me. =D
As for her eating and such, she does eat, just not much. What she does eat is healthy so we keep feeding that to her. She seems to want a lot of apples! This is good because we have a lot!
Please keep praying for strength in her and for her to stay healthy. We are also continuing prayers for her heart. Her heart Dr. will do the big check up in a couple of months when her body has recovered from surgery.
She is also very stir crazy. She doesn't have much sit in her, I have no idea where she got that from either, hummm. She knows she has to lie low, but it is hard for her to do this all of the time. She does get up and play games and such, but is very tired after a few hours of that. No she doesn't sit the whole time, she sits then walks and sits and walks....you get the idea. Her balance is coming along very nice too. At first it was a new experience to stand up straight. She has that down now which is great, now I have to get her to walk straight up instead of leaning forward. Something else to get used to. Strength, strength, strength.....that is what she needs!
I think that is all for now. I am going to go and join them in "movie time"! I think Hairspray is the movie of choice tonight.
Have a great evening! Thank you for your continued prayers and your walk with us in this journey. You can see how God is answering all of our prayers together. What a blessing! I am truly blessed!
We Praise you Father.......today and always.
Friday, December 19, 2008
The end of a snow day!
So what a way to start the day today. As I have mentioned before that Ben has been sick, well I didn't mention that he is a little spoiled as well. He is used to having all of mommy's attention during the day and then when you add breathing treatments and fevers on top of it, I have pretty much been expired before 8 am this morning. I called Ron and he came home from work to help out around here a little bit and it was a good thing. Kasi had to have a shower again and with Ben's energy after breathing treatments it was a little crazy over here. Not to mention the fact that Kasi didn't sleep good at all last night and we woke up several times and then Ben decided that 5 am was a great time to get up and cough and cough. That was the first breathing treatment of the day. It has been a day to say the least! Then you have Aubree, poor Aub getting the shaft on any attention. I have been going out of my way to have conversations with her and spend time with her too. We had movie time in which I only got up a couple of times to take care of "things", but for the most part sat....kindda!
I am thinking Ben is getting over the "hump" of being sick which is a blessing! Now if Kasi could sleep through the night and I could sleep in a real bed, that would be great. I am not complaining, but just praying!
Kasi's progress is about the same as yesterday. She is getting sick of being in bed all of the time. Aubree, Kasi, and I played a game by the table today for a bit. It was nice to get her out of bed. The shower felt great too, but getting her dressing changed didn't feel good at all. If you want to hear her really complain, that is when it happens. She knows that we have no choice and just takes deep breaths. She laid in bed today without her brace. She feels very weak without it and that is a little weird for her. She really prefers to keep it on. I wish we could do some exercises to help give her strength, you know me!!! And if you don't exercise is huge! I know it is a little early for that. I don't know if I mentioned this at all, but PT never came to see us at the hospital. They were supposed to come down a few days in a row, but I never saw them. Then when they said we could go home, we didn't wait for them. Monday is her first appointment so we will see what we can do then. I think that is all for now. We are closing this day down with some movies and such. It was hard watching kids from the neighborhood all go out with their sleds. Kasi loves to go sledding! I am glad she got some in before this big surgery.
I am loving the snow and all the reminders with it! God is good and pure! This is the day that the Lord has made, I will rejoice and be glad in it. Even if it has been challenging :-)
I am thinking Ben is getting over the "hump" of being sick which is a blessing! Now if Kasi could sleep through the night and I could sleep in a real bed, that would be great. I am not complaining, but just praying!
Kasi's progress is about the same as yesterday. She is getting sick of being in bed all of the time. Aubree, Kasi, and I played a game by the table today for a bit. It was nice to get her out of bed. The shower felt great too, but getting her dressing changed didn't feel good at all. If you want to hear her really complain, that is when it happens. She knows that we have no choice and just takes deep breaths. She laid in bed today without her brace. She feels very weak without it and that is a little weird for her. She really prefers to keep it on. I wish we could do some exercises to help give her strength, you know me!!! And if you don't exercise is huge! I know it is a little early for that. I don't know if I mentioned this at all, but PT never came to see us at the hospital. They were supposed to come down a few days in a row, but I never saw them. Then when they said we could go home, we didn't wait for them. Monday is her first appointment so we will see what we can do then. I think that is all for now. We are closing this day down with some movies and such. It was hard watching kids from the neighborhood all go out with their sleds. Kasi loves to go sledding! I am glad she got some in before this big surgery.
I am loving the snow and all the reminders with it! God is good and pure! This is the day that the Lord has made, I will rejoice and be glad in it. Even if it has been challenging :-)
Thursday, December 18, 2008
What a day!
Here I am taking a little break from the busyness of the day. It seems as if each day God just fills us with more and more smiles. Kasi has been walking around today a lot. She is getting a little stir crazy. It seems funny to see her walking so soon and with no pain. Yep, no pain....still! God is an amazing God! She is starting to get into bed by herself, but I still have to help her out. I am not sure when that will change, but one step at a time. Kasi made a little card, but didn't finish it because she got a little tired. We are getting ready to eat our first meal together at the table. She can sit for about 20 mins so we will have to eat fast, but it will be nice to eat together.
I gave her a break from a shower today. It was pretty exhausting yesterday for her so we will do that tomorrow once again and then she can sleep all day. I keep cleaning and cleaning until Ben is done coughing. And then I will start doing the big clean once a day instead of 3 times.
Our first Dr. appointment is Monday already. They are going to check out her back and see how she is doing. It will be nice to share all the progress Kasi is making with them. I am wondering if they have to keep the restricts on though. Pretty sure they will have to. It is all about her back fusing now. I wish we could hurry up that process too. Yep that is me.....hurry up already :-)
I think that is all for now. She has a really good day! She played the piano too for a bit. Just some nice Christmas music. It is nice to hear the music again!
As I write this she is resting peacefully. What a day we had! Thank you God once again for your blessing of life! And for your strength!
Thank you for all your encouragement through that comments you make. I know some of you are having a hard time commenting. I don't know why, it is free, but you know computers! I know that you are all praying! Thank you for those!
I gave her a break from a shower today. It was pretty exhausting yesterday for her so we will do that tomorrow once again and then she can sleep all day. I keep cleaning and cleaning until Ben is done coughing. And then I will start doing the big clean once a day instead of 3 times.
Our first Dr. appointment is Monday already. They are going to check out her back and see how she is doing. It will be nice to share all the progress Kasi is making with them. I am wondering if they have to keep the restricts on though. Pretty sure they will have to. It is all about her back fusing now. I wish we could hurry up that process too. Yep that is me.....hurry up already :-)
I think that is all for now. She has a really good day! She played the piano too for a bit. Just some nice Christmas music. It is nice to hear the music again!
As I write this she is resting peacefully. What a day we had! Thank you God once again for your blessing of life! And for your strength!
Thank you for all your encouragement through that comments you make. I know some of you are having a hard time commenting. I don't know why, it is free, but you know computers! I know that you are all praying! Thank you for those!
Wednesday, December 17, 2008
here is a picture!
Here is a picture of Kasi's back. Notice how straight it is and not one "hump" at all!
Praise God!
You can see that there is a lot of healing to do too! Underneath this there are 2 rods and many screws, not to mention the bone fusion! Wow, Kasi you are an amazing girl of strength. I definitely know where your strength comes from! I will Praise Him with you!
we are home
Here I am at the end, well it is only 5:30 pm, but it feels like the end of a long first day at home. Kasi is doing great and resting a lot. This is good for her little body to get better. I gave her a shower today, and she saw her back today for the first time. It was kind of shocking for her. She now understands the miracle in having no pain and only discomfort.
So, today we have begun to live our new "normal" life. Ben is sick and wants his mommy and at the same time Kasi needs hers. It is a crazy time sometimes between changing my shirt so the one I had on with Ben isn't close to Kasi and spraying Lysol in all the rooms. My Clorox wipes have become my friend and I love the new soft-scrub spray with bleach. Hand sanitizer is on the counters as well as anti-bacterial soap at every sink. Dial has become the soap in every shower and bath as well. Sounds a little nuts, but I would hate for Kasi to get sick. Her body has been run down with surgery and her heart is the first place that anything would or could go. So we are thankful that the sickness has stayed away from her and we will continue to pray against any germs that might think about entering her room. (well our room until yesterday! Now my bed has become a lazy-boy next to the bed)
It has been a long day already like I said before and it will be the first of many long days. Our journey, although a big part over, has really just begun. She has a long road of recovery and just sitting/lying around. 3-6 months worth! After Christmas school will begin at home with me being her main teacher. She will be doing classes online with the video cam and I will be helping her at home with the stuff she has to get done. This will be a challenge for us too, especially with Ben running around. He is a blessing! A very busy blessing! We will go forward in God's grace as we have this past weekend. Looking at how amazing He has been helps me go forward in Joy knowing He is with us every step we take.
I keep praying for a quick healing for Kasi and for her back to fuse great! It's funny today she went to get something out of the cupboard and she said it was weird because she didn't have to reach. She is taller!!!!
I am also praying for patience, I know be careful what you pray for. I know what I need to grow in and this is exactly how God likes to teach me to lean on Him. When He is all there is! And really that is true for everyone in every circumstance. He is our everything, we can ignore Him or acknowledge Him. I am finding Joy in acknowledging Him and His work everyday! Thank you God for your love and continued blessing on my life!
I will blog again soon!
So, today we have begun to live our new "normal" life. Ben is sick and wants his mommy and at the same time Kasi needs hers. It is a crazy time sometimes between changing my shirt so the one I had on with Ben isn't close to Kasi and spraying Lysol in all the rooms. My Clorox wipes have become my friend and I love the new soft-scrub spray with bleach. Hand sanitizer is on the counters as well as anti-bacterial soap at every sink. Dial has become the soap in every shower and bath as well. Sounds a little nuts, but I would hate for Kasi to get sick. Her body has been run down with surgery and her heart is the first place that anything would or could go. So we are thankful that the sickness has stayed away from her and we will continue to pray against any germs that might think about entering her room. (well our room until yesterday! Now my bed has become a lazy-boy next to the bed)
It has been a long day already like I said before and it will be the first of many long days. Our journey, although a big part over, has really just begun. She has a long road of recovery and just sitting/lying around. 3-6 months worth! After Christmas school will begin at home with me being her main teacher. She will be doing classes online with the video cam and I will be helping her at home with the stuff she has to get done. This will be a challenge for us too, especially with Ben running around. He is a blessing! A very busy blessing! We will go forward in God's grace as we have this past weekend. Looking at how amazing He has been helps me go forward in Joy knowing He is with us every step we take.
I keep praying for a quick healing for Kasi and for her back to fuse great! It's funny today she went to get something out of the cupboard and she said it was weird because she didn't have to reach. She is taller!!!!
I am also praying for patience, I know be careful what you pray for. I know what I need to grow in and this is exactly how God likes to teach me to lean on Him. When He is all there is! And really that is true for everyone in every circumstance. He is our everything, we can ignore Him or acknowledge Him. I am finding Joy in acknowledging Him and His work everyday! Thank you God for your love and continued blessing on my life!
I will blog again soon!
Tuesday, December 16, 2008
Home
Hi to all once again! This is Jodi again and well I am not on any muscle relaxers like Kasi is so hopefully this makes a little more sense. I know what she was talking about in her post though and I think you can figure it out as well. She is funny and rolls her eyes at me once in a while. For all those that know me, well the quicker we get out of here the better! So the patience in me is not good. This is normal :-)
This is a little later than my normal update, but that is because it has been a busy morning in here already. Starting at 6:30 when her Dr. came in until now. Dr. Russo came in and looked her over and said she looks great! Of course this is something we already knew. He then took out her drain, Yeah! Her incision looks great, he changed the dressing on that and said she has one more thing to do and we are outta here!!! Yep we are coming home today! Amazing, yes she is.
Today I ask all of you who are faithfully praying for her to continue and pray for the one specific thing she has to do today, which if I told you she would be mad so God knows....:-) And the other thing that I would love for you to join me is praise. Praise Him for His blessings of Peace, Comfort, and Healing. Yes they are caps because they are who God is and they are what He has given of Himself in abundance. Thank you Father for giving us everything more than we could ever thing or imagine!
I think that is all for now. The next time I update will be at home :-)
Blessing to you all!
And Praise God from whom all those Blessings flow!
To God be all the glory!
Jodi
Ok so as I wrote this the one thing she had to do....she just did! God is soooo good! He hears the prayers that are even unspoken! See you at home!
This is a little later than my normal update, but that is because it has been a busy morning in here already. Starting at 6:30 when her Dr. came in until now. Dr. Russo came in and looked her over and said she looks great! Of course this is something we already knew. He then took out her drain, Yeah! Her incision looks great, he changed the dressing on that and said she has one more thing to do and we are outta here!!! Yep we are coming home today! Amazing, yes she is.
Today I ask all of you who are faithfully praying for her to continue and pray for the one specific thing she has to do today, which if I told you she would be mad so God knows....:-) And the other thing that I would love for you to join me is praise. Praise Him for His blessings of Peace, Comfort, and Healing. Yes they are caps because they are who God is and they are what He has given of Himself in abundance. Thank you Father for giving us everything more than we could ever thing or imagine!
I think that is all for now. The next time I update will be at home :-)
Blessing to you all!
And Praise God from whom all those Blessings flow!
To God be all the glory!
Jodi
Ok so as I wrote this the one thing she had to do....she just did! God is soooo good! He hears the prayers that are even unspoken! See you at home!
Monday, December 15, 2008
hey it is me kasi
hey to all, my back is a little sore but i was walking a little bit. ( to the bathroom and back) lol. i tried to sat in a chair but that doesn't feel good. anyway i have alot of books to read and movies to watch. but today i was going to watch a vidio all i saw was the previews and the creadits. it was a great movie....lol....! i just also got my iv out last one so i'm little more free than i was so that is good. well an other story is my thought she could unpluge something. i told her no but she had to and there she it went the alarm went off and all it got was louder and louder. it was funny. anyway i wanted to say hi and thankyou for your thoughts and prayers.
love you all very much,
kasi
love you all very much,
kasi
Morning day 4
Hi to all! It is Monday morning at 7:45 am. Kasi is doing well this morning! She had the best night sleep so far. That was nice for both of us. She did get put back on oxygen last night because her numbers dropped a bit, but with a little help she slept like a baby. Dr. Russo has been in already this morning and likes the progress she has made so far. He did say that her drain needs to stay in one more day at least because she is still draining too much to take it out.
As for Kasi's comfort. She doesn't really have the pain from her actual surgery as much as from her brace. The edge at the top of her brace come across her incision and that is painful. They will be calling Mary Free Bed to see if they can fix that today. But she has to keep it on at all times. This brace she can even shower in. It is a little harder to get into too. We will get better at it each day I am sure.
Last night I helped Kasi stand up for a bit and she looked at me and said, "I am taller". Yes she is! This is the first thing we will do once she can walk, measure her. :-)
I think that is all for now! God is healing her up and she is doing really well! She is on the floor now so she can talk on the phone and such. She also has been on the computer as a lot of you know already!
Thank you for your faithfulness in praying. She is a testimony to God's amazing power and what He does when His people pray.
As for Kasi's comfort. She doesn't really have the pain from her actual surgery as much as from her brace. The edge at the top of her brace come across her incision and that is painful. They will be calling Mary Free Bed to see if they can fix that today. But she has to keep it on at all times. This brace she can even shower in. It is a little harder to get into too. We will get better at it each day I am sure.
Last night I helped Kasi stand up for a bit and she looked at me and said, "I am taller". Yes she is! This is the first thing we will do once she can walk, measure her. :-)
I think that is all for now! God is healing her up and she is doing really well! She is on the floor now so she can talk on the phone and such. She also has been on the computer as a lot of you know already!
Thank you for your faithfulness in praying. She is a testimony to God's amazing power and what He does when His people pray.
Sunday, December 14, 2008
something quick
Well we all know how amazing our God is! I just thought I would let you know that Kasi is on the floor already and in zero, yep zero pain! He provided blood that gave her strength and she has not needed anything since! Seriously the nurses are all amazed....God is an awesome God! He knows our bodies and takes care of them better than anyone else ever could. Praise Him! I am looking at her in awe....one more thing....the surgery Kasi had is one of the most painful surgeries you can have. Just so you know. :-)
I am beaming.....good night!
I am beaming.....good night!
it's me Kasi----yep
hi, everyone. the doctors just got me up and sitting.Right now i'm sitting in a chair for the first time. it was a little hard and uncomfortable. my hospitail veiw is good. i have crans to watch all day. and today my face is draning and it doesn't feel the best. my forhead is bruised and it hurts. i'm just starting to eat. thankyou for your thoughts and prayers. and by the way they changed there pumps and i went thorough 3.
Morning day 3
Good morning to all! It is 7:45 am Sunday, Dec. 14. Kasi and I had a pretty good night of sleep. I was right here by her bedside all night once again. Which is right were I need to be. Kasi is working on her throwing arm up here, that is forsure. Every time she needed me through the night she would throw her cold wet washcloth off her head at me. Yep, her spirits are good. She is in pain, but pushes her button when she wakes up and then drifts back off to sleep.
Kasi did get her brace last evening, but we didn't have time to put it on so today that will be happening sometime. With her new brace on she will be able to sit up at least and that will be good. They will try and get her to walk later, but this is going to be a process for her. She will have to force herself to do this even if she really doesn't want to. We will see how this goes. She has been a very determined girl so far and I am thinking she will push through this as well.
The doctors were just in here and said she will be staying in the PICU today still. This is because her blood levels have dropped once again and they are going to start a blood transfusion. This will be started any minute and she should feel a lot better after she receives this. A blood transfusion takes a while to complete so that is why we are going to be on this floor yet another day. Her nurse came in and said her goals for today are:
getting up and walking a bit
going on pain meds that she will take orally
and getting Kasi to drink more
These things are great things for her well being and getting her out of bed.
Please keep praying for all her steps of the day. It would be great to get on the floor.
God is working and we are seeing Him continually in all the little things! Don't think that He didn't answer the prayers about her blood, He did! His way of answering was let Him help her feel better right now by giving her blood from someone whose desire it was to help people in need. Thank you to all of you who give blood! It is a life saving gift!
Have a great Sunday and enjoy being with the One who gave His blood for you...:-)
Kasi did get her brace last evening, but we didn't have time to put it on so today that will be happening sometime. With her new brace on she will be able to sit up at least and that will be good. They will try and get her to walk later, but this is going to be a process for her. She will have to force herself to do this even if she really doesn't want to. We will see how this goes. She has been a very determined girl so far and I am thinking she will push through this as well.
The doctors were just in here and said she will be staying in the PICU today still. This is because her blood levels have dropped once again and they are going to start a blood transfusion. This will be started any minute and she should feel a lot better after she receives this. A blood transfusion takes a while to complete so that is why we are going to be on this floor yet another day. Her nurse came in and said her goals for today are:
getting up and walking a bit
going on pain meds that she will take orally
and getting Kasi to drink more
These things are great things for her well being and getting her out of bed.
Please keep praying for all her steps of the day. It would be great to get on the floor.
God is working and we are seeing Him continually in all the little things! Don't think that He didn't answer the prayers about her blood, He did! His way of answering was let Him help her feel better right now by giving her blood from someone whose desire it was to help people in need. Thank you to all of you who give blood! It is a life saving gift!
Have a great Sunday and enjoy being with the One who gave His blood for you...:-)
Saturday, December 13, 2008
good night
It has been a long day once again, but a good one. Kasi has stayed strong and endured much. She is resting comfortably with her "button" in her hand for pain. She is not having to use it much, but that is because God is really protecting her and she is relying on Him for all her needs. She is really doing a great job. We are still waiting for her blood levels to improve and for her temp to go down. Also, as she falls asleep her oxygen level goes down a lot. Enough for the alarms to go off. I am hoping for a good night sleep for her and myself so we are working on deep breaths.
Thank you for your continued prayers. We have a long road ahead and we are taking it one day at a time.
Always looking up!
Thank you for your continued prayers. We have a long road ahead and we are taking it one day at a time.
Always looking up!
brace fitting
Hello to all! Just a little update on Kasi today. She was just fitted for her new brace which will be a little different than her old one. It is like a turtle shell with the velcro on the side instead of the back. This will be good for her in some ways. I just can't imagine having the brace go against an incision like she has on her back. It was quit the ordeal when she was fitted. She once again showed her strength and I am looking at her, now sleeping, and can't believe all that she has been through. Not just today and yesterday, but in her little life. To be casted for this brace she had to be flipped over completely. It hurt her soooo bad and she didn't complain. She just endured. That is what she is doing through all of this, enduring.
Later this afternoon she will be getting the brace on and then she will be encouraged to get up and move. This will be challenging for her because she has a low blood count. Pray that she doesn't get dizzy and that she finds the strength to keep on pushing herself.
I will update more later!
Thank you!
God is here once again and we see that in her face with the peace only He can give!!
Later this afternoon she will be getting the brace on and then she will be encouraged to get up and move. This will be challenging for her because she has a low blood count. Pray that she doesn't get dizzy and that she finds the strength to keep on pushing herself.
I will update more later!
Thank you!
God is here once again and we see that in her face with the peace only He can give!!
It's morning!
It is 8:55 am and Kasi has once again dozed off for a little bit. Which is good! She did have a pretty good night, although she was getting sick once in a while.
Kasi is having to be rotated quite a bit and when she is rotated it causes a lot of pain. Also, she gets a bit of nausea because she has lost a lot of blood. They keep checking her blood levels and at this time she does have numbers for a transfusion, but because she is young they are holding off to see if her body will catch up. Because of her blood loss she gets dizzy and her heart rate is a little high. This just makes being awake and moved hard.
She has only used her pain button 2 times. It is not because she is in extreme pain as much as she is really uncomfortable. She is a very, very strong little lady! It is amazing the perseverance she is showing. She amazes me!
Today we are looking at her getting casted for a brace. This might cause a little bit of pain, okay a lot, so pray for her and that process. As soon as she gets the brace they really want to start moving her a little more. Right now she can't be up at all.
Kasi said she is feeling pretty good. She is very stiff and that is because she if swollen all over. Her oxygen is off for the first time and she is doing pretty good, but is on the border to having it put back on. On room air her O2 sats drop which means she is not taking deep enough breaths. I know that the respiratory therapist will be in here today and start helping with that.
I think that is all for now. We are still in the PICU and I don't think we are moving anytime soon.
Thank you again for taking Kasi before the thrown of God. He is amazing and does amazing things. I am looking forward to see Him at work once again today!
Kasi is having to be rotated quite a bit and when she is rotated it causes a lot of pain. Also, she gets a bit of nausea because she has lost a lot of blood. They keep checking her blood levels and at this time she does have numbers for a transfusion, but because she is young they are holding off to see if her body will catch up. Because of her blood loss she gets dizzy and her heart rate is a little high. This just makes being awake and moved hard.
She has only used her pain button 2 times. It is not because she is in extreme pain as much as she is really uncomfortable. She is a very, very strong little lady! It is amazing the perseverance she is showing. She amazes me!
Today we are looking at her getting casted for a brace. This might cause a little bit of pain, okay a lot, so pray for her and that process. As soon as she gets the brace they really want to start moving her a little more. Right now she can't be up at all.
Kasi said she is feeling pretty good. She is very stiff and that is because she if swollen all over. Her oxygen is off for the first time and she is doing pretty good, but is on the border to having it put back on. On room air her O2 sats drop which means she is not taking deep enough breaths. I know that the respiratory therapist will be in here today and start helping with that.
I think that is all for now. We are still in the PICU and I don't think we are moving anytime soon.
Thank you again for taking Kasi before the thrown of God. He is amazing and does amazing things. I am looking forward to see Him at work once again today!
Friday, December 12, 2008
a long night
I can't say thank you enough to all of you who have prayed and are still praying for Kasi. I am amazed at the strength that Kasi has shown and is still showing. God is in control and it is evident.
I do have one more request for the night. I am hoping you can come along side me in praying for her tummy. She is getting sick. She sat up a little bit at about 8:05, okay she can only be at a 30 degree sit at most. She had her head up a touch if you call that sitting up. During that time she woke up a little more too which was nice. Although it was good to hear her say her first real words since surgery it didn't last long and she got sick. In fact, it was about 20 mins. They gave her meds at the first sign of being sick, but it didn't help. She did end up getting sick. Just having her back surgery she is not able to sit up, so I just did my best to turn her head and clean her up. So, it is not a fun thing for her. They did give her a different med after that and she fell right to sleep once again and I think she is settled for a while. She has been through so much being sick is not a great thing for her or me. We both want to rest. :-)
This has been a very long day. It has also been a day filled with God's blessing....we are and will continue to Praise Him!
Love to all of you!!
Jodi
I do have one more request for the night. I am hoping you can come along side me in praying for her tummy. She is getting sick. She sat up a little bit at about 8:05, okay she can only be at a 30 degree sit at most. She had her head up a touch if you call that sitting up. During that time she woke up a little more too which was nice. Although it was good to hear her say her first real words since surgery it didn't last long and she got sick. In fact, it was about 20 mins. They gave her meds at the first sign of being sick, but it didn't help. She did end up getting sick. Just having her back surgery she is not able to sit up, so I just did my best to turn her head and clean her up. So, it is not a fun thing for her. They did give her a different med after that and she fell right to sleep once again and I think she is settled for a while. She has been through so much being sick is not a great thing for her or me. We both want to rest. :-)
This has been a very long day. It has also been a day filled with God's blessing....we are and will continue to Praise Him!
Love to all of you!!
Jodi
This is Dad Brower for Jodi (she is in the room with Kasi)
Kasi is in Peds ICU which will be her home for a few days. She is groggy and quiet! She is awake and does respond to questions, like "Does it hurt?" She shakes her head no. Her face is quite swollen because of laying on her face for 6 hours with her feet elevated.
This is like De Ja Vu! The first nurse she has is a male nurse she had 12 years ago! He does remember us from then. I understand that my cousin Shirley will be on tonight (she was one of her nurses 12 years ago also).
Thank You for all the prayers on Kasi's behalf. This is another answer to prayer. GOD is so GOOD!!!
Kasi is in Peds ICU which will be her home for a few days. She is groggy and quiet! She is awake and does respond to questions, like "Does it hurt?" She shakes her head no. Her face is quite swollen because of laying on her face for 6 hours with her feet elevated.
This is like De Ja Vu! The first nurse she has is a male nurse she had 12 years ago! He does remember us from then. I understand that my cousin Shirley will be on tonight (she was one of her nurses 12 years ago also).
Thank You for all the prayers on Kasi's behalf. This is another answer to prayer. GOD is so GOOD!!!
last update for a while
Well, the wait is over. Surgery is complete. She has been straighten out to about 27-29 degrees. This is great really!! Before surgery she was about 48 and 65 degrees. She should be a good balance. She is still in the operating room having the final little touches then she will move to the recovery for a bit. She will be in the PICU tonight forsure because of her history. Her Dr. is really excited about how well everything went. He was full of smiles.
Keep up the prayers for her to keep up the great work at life! She is a fighter! Her doctor calls her a "very special little girl". Something we all already know. She is a gift from God and I am blessed to be her mom for one more day. Thank you God for all your gifts, help us NEVER to take you or your work for granted. Amen amen!
Please praise Him! He is the great physician! Also pray for quick healing.....
God is great!!! All the time!!!
Keep up the prayers for her to keep up the great work at life! She is a fighter! Her doctor calls her a "very special little girl". Something we all already know. She is a gift from God and I am blessed to be her mom for one more day. Thank you God for all your gifts, help us NEVER to take you or your work for granted. Amen amen!
Please praise Him! He is the great physician! Also pray for quick healing.....
God is great!!! All the time!!!
update #2
We just received another update and Kasi is doing well. At this time she is getting her own blood and is not receiving a transfusion. This is a praise God! He is faithful and in control of all that is happening in the operating room!
Her rods and screws have been placed and the next step is to be making adjustments. Pray for her flexibility. The more flexible she is the better correction they are able to make. This is a big part of her quality of life when she is older. The straighter the better. :-)
They will be taking X-rays and when they feel like they have the best correction possible they will start the bone fusion. It will be another 1-2 hours after that before she is done with surgery.
At this time her heart is holding strong.....keep praying! God is good!!!
Thank you for all your prayers.....God is with her and around her. We can feel the strength of all of your prayers. God is here!!!
Her rods and screws have been placed and the next step is to be making adjustments. Pray for her flexibility. The more flexible she is the better correction they are able to make. This is a big part of her quality of life when she is older. The straighter the better. :-)
They will be taking X-rays and when they feel like they have the best correction possible they will start the bone fusion. It will be another 1-2 hours after that before she is done with surgery.
At this time her heart is holding strong.....keep praying! God is good!!!
Thank you for all your prayers.....God is with her and around her. We can feel the strength of all of your prayers. God is here!!!
update
The nurse just came out and told us that everything is going good in the operating room. Things did start out a little slower than expected, but they are running smoothly. The nurse will be back in about 2 hours for another update or when they have put the screws in. Whatever one comes first. Keep praying.....God is answering and is in all the little things as well as the big things. He has worked in the room already getting her lines in smoothly. Praise God, He is good!!!
Continue to pray for total healing! God can make her absolutely straight even if the Dr.'s don't think they are able to. We know God can do immeasurably more than we could ever ask or imagine..... Read it Eph. 3:20
Believe!
Continue to pray for total healing! God can make her absolutely straight even if the Dr.'s don't think they are able to. We know God can do immeasurably more than we could ever ask or imagine..... Read it Eph. 3:20
Believe!
Kasi is in....
I just want you to know that this is my second attempt at this because my computer shut down on me.....UGH! That would be the first request....no more shutting down. :-)
Our day started out today at about 4:00 am and which we woke up and started getting ready for our big day. Kasi, well she slept until about 4:30. Good for her. It was hard to sleep last night at first when it started to really hit Kasi and she started to cry, and rightfully so. She is a strong little girl who has been through so much in her little life, she understands more than we even know. So we prayed together and she slept holding my hand all night. God is good....
We got up here to the hospital at about 5:30 this morning and walked into a very busy registration room. God is going to be very busy today giving peace to all those who need it! Kasi was at peace this morning which is another.....Praise God!
After the registry room we were put into a room in which they got Kasi ready, kindda. She had her blood taken, in case of her needing a transfusion, and they hooked up to a pump that will help circulate her blood around her legs. It is really like a big blood pressure cuff for her legs.
From there we went to the surgical waiting area. At this time she said "see you later" to her Grandparents and Ron and I went into the next room with her. I said a prayer with her because she once again started to cry, of course, and God gave her His peace. At that time Pastor Dave came in, while she was getting an IV that didn't work, bummer, and also had a great prayer with her. She then started to smile and be her funny self again. Not totally, but I was trying to help a little with that. They did give her a pretty pink surgical "hat" to wear and when I went into the room I asked them all to sign it and give it to her for a souvenir. They said they would, so she will be able to show you all the people that are in there for her during surgery.
One thing about Kasi's surgery that is different than most is the fact that they are going to have to check her legs and arms continually to make sure that her spinal cord is not compromised. This means that the anesthetic will be given continually through an IV instead of switching to gas. So, at the end of surgery the chances of her being on a breathing machine is greater than with gas. That is another prayer request for all of you....
She will be in surgery for at least 6 hours, but the 6 hours has not really started yet. They gave us a pager that will update us all of the time. And the nurse said that at the first update we can start the 6 hours. Also, when the "6 hours" is finished, she will still be in the room getting ready for the PICU, peds ICU. I put the 6 hours in quotes because the chances of her being in longer is pretty good. I will let you know as I get information.
I think that is all for now.....we are still waiting for the pager to go off, so don't start your watches yet. It will be a long day! God is with her. We can't ever be separated from Him or His power. He loves her more than you or even me!!!
Keep praying....God is good!
Love to you all!
Jodi
I will be updating again soon!
Our day started out today at about 4:00 am and which we woke up and started getting ready for our big day. Kasi, well she slept until about 4:30. Good for her. It was hard to sleep last night at first when it started to really hit Kasi and she started to cry, and rightfully so. She is a strong little girl who has been through so much in her little life, she understands more than we even know. So we prayed together and she slept holding my hand all night. God is good....
We got up here to the hospital at about 5:30 this morning and walked into a very busy registration room. God is going to be very busy today giving peace to all those who need it! Kasi was at peace this morning which is another.....Praise God!
After the registry room we were put into a room in which they got Kasi ready, kindda. She had her blood taken, in case of her needing a transfusion, and they hooked up to a pump that will help circulate her blood around her legs. It is really like a big blood pressure cuff for her legs.
From there we went to the surgical waiting area. At this time she said "see you later" to her Grandparents and Ron and I went into the next room with her. I said a prayer with her because she once again started to cry, of course, and God gave her His peace. At that time Pastor Dave came in, while she was getting an IV that didn't work, bummer, and also had a great prayer with her. She then started to smile and be her funny self again. Not totally, but I was trying to help a little with that. They did give her a pretty pink surgical "hat" to wear and when I went into the room I asked them all to sign it and give it to her for a souvenir. They said they would, so she will be able to show you all the people that are in there for her during surgery.
One thing about Kasi's surgery that is different than most is the fact that they are going to have to check her legs and arms continually to make sure that her spinal cord is not compromised. This means that the anesthetic will be given continually through an IV instead of switching to gas. So, at the end of surgery the chances of her being on a breathing machine is greater than with gas. That is another prayer request for all of you....
She will be in surgery for at least 6 hours, but the 6 hours has not really started yet. They gave us a pager that will update us all of the time. And the nurse said that at the first update we can start the 6 hours. Also, when the "6 hours" is finished, she will still be in the room getting ready for the PICU, peds ICU. I put the 6 hours in quotes because the chances of her being in longer is pretty good. I will let you know as I get information.
I think that is all for now.....we are still waiting for the pager to go off, so don't start your watches yet. It will be a long day! God is with her. We can't ever be separated from Him or His power. He loves her more than you or even me!!!
Keep praying....God is good!
Love to you all!
Jodi
I will be updating again soon!
Sunday, December 7, 2008
A little history
Over the past week I have had a lot of questions about Kasi and her surgery that is coming up. I am hoping this will answer some of those questions for all of you.
Kasi was born with a coarctation of her aorta, which means there was a narrowing in her aorta. Although there are many babies born with this, Kasi's was rare in the place in which this coarctation was and the collaterals that had grown around it. She ended up having her aorta rebuilt when she was about 3 months old. We were in the hospital for a total of about 60 days and she had 3 surgeries in that time. She was a very sick little baby for a long time.
At this time her aorta is now re-narrowing and the vessels that feed into her major lower extremities are also narrowed. This means that her blood pressure in her upper body is higher than in her lower body. This includes her spine. That brings me to her back and the challenges she has with it.
When Kasi was about 4 I noticed she had a "hump" on her back and took her into the Dr. right away. She was sent to a specialist and we discovered that she had scoliosis. Of course Kasi couldn't have the normal scoliosis, she had to have something very rare in which she would get scoliosis when she was very young. So, at the age of 5 she started wearing a brace 23 hours a day. This has been a long haul with bracing since she is now 12. She currently wears a night brace and a day brace. This has held her to a minimal curve up until a few months ago. Her back has now progressed to a severe curve in which surgery is necessary.
This surgery will be about 5-6 hours long in which she will have 2 rods put into her back. She will have her back fused first and the rods are to hold the fusion in place. With everything that is going on with her heart this might be more challenging than the normal spine surgery. She will gain about 2 inches during surgery, in which she is very excited about, but we are not sure what will happen to her aorta. Since most patience that have this surgery don't have aorta problems there is no way to know what happens when someone is straighten out. Maybe nothing at all will be affected by this, but it still is a concern. Also, the blood supply to her spinal cord because of the narrowing in her aorta makes this a little more difficult as well.
Kasi is having this surgery this coming Friday, Dec. 12, at 7:30 am. She will be in the PICU for 24-48 hours and from there she will go to the floor. She will most-likely have about a 7 day stay in the hospital and the rest of her recovery at home. Kasi will not be attending school for a few months because her back will take about 3-6 months for the fusion to heal. At first she will be able to sit for about 20 minutes and then have to walk or lie down. She will have a few months for recovery and about 6 mos to 1 year for full recovery.
I hope this updates you all a little bit about this path we are on and can help you in your prayers for her. This is a very stressful time for us, but we know and hold on to the fact that God is in control. Nothing that happens will change the fact that He loves us and that He is the Lord!
Please pray for peace in the coming days and weeks. As her mom, and having walked a long road with her before, I already anticipate what is to come. "Be still and know that I am God"....that is what we know, and we cling to this! Kasi's has three verses that are her favorite verses that I would love to share with you. It helps you know a little about who she is as well.
Ps 73:26 My flesh and my heart may fail, but God is my strength of my heart and my portion forever.
Jer. 29:11 "For I know the plans I have for you, "declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Romans 8:37-39 in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
She is strong and is holding on to these things she knows to be true. She has experienced them in the past and will continue to hold on to these truths.
Kasi was born with a coarctation of her aorta, which means there was a narrowing in her aorta. Although there are many babies born with this, Kasi's was rare in the place in which this coarctation was and the collaterals that had grown around it. She ended up having her aorta rebuilt when she was about 3 months old. We were in the hospital for a total of about 60 days and she had 3 surgeries in that time. She was a very sick little baby for a long time.
At this time her aorta is now re-narrowing and the vessels that feed into her major lower extremities are also narrowed. This means that her blood pressure in her upper body is higher than in her lower body. This includes her spine. That brings me to her back and the challenges she has with it.
When Kasi was about 4 I noticed she had a "hump" on her back and took her into the Dr. right away. She was sent to a specialist and we discovered that she had scoliosis. Of course Kasi couldn't have the normal scoliosis, she had to have something very rare in which she would get scoliosis when she was very young. So, at the age of 5 she started wearing a brace 23 hours a day. This has been a long haul with bracing since she is now 12. She currently wears a night brace and a day brace. This has held her to a minimal curve up until a few months ago. Her back has now progressed to a severe curve in which surgery is necessary.
This surgery will be about 5-6 hours long in which she will have 2 rods put into her back. She will have her back fused first and the rods are to hold the fusion in place. With everything that is going on with her heart this might be more challenging than the normal spine surgery. She will gain about 2 inches during surgery, in which she is very excited about, but we are not sure what will happen to her aorta. Since most patience that have this surgery don't have aorta problems there is no way to know what happens when someone is straighten out. Maybe nothing at all will be affected by this, but it still is a concern. Also, the blood supply to her spinal cord because of the narrowing in her aorta makes this a little more difficult as well.
Kasi is having this surgery this coming Friday, Dec. 12, at 7:30 am. She will be in the PICU for 24-48 hours and from there she will go to the floor. She will most-likely have about a 7 day stay in the hospital and the rest of her recovery at home. Kasi will not be attending school for a few months because her back will take about 3-6 months for the fusion to heal. At first she will be able to sit for about 20 minutes and then have to walk or lie down. She will have a few months for recovery and about 6 mos to 1 year for full recovery.
I hope this updates you all a little bit about this path we are on and can help you in your prayers for her. This is a very stressful time for us, but we know and hold on to the fact that God is in control. Nothing that happens will change the fact that He loves us and that He is the Lord!
Please pray for peace in the coming days and weeks. As her mom, and having walked a long road with her before, I already anticipate what is to come. "Be still and know that I am God"....that is what we know, and we cling to this! Kasi's has three verses that are her favorite verses that I would love to share with you. It helps you know a little about who she is as well.
Ps 73:26 My flesh and my heart may fail, but God is my strength of my heart and my portion forever.
Jer. 29:11 "For I know the plans I have for you, "declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future."
Romans 8:37-39 in all these things we are more than conquerors through him who loved us. For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
She is strong and is holding on to these things she knows to be true. She has experienced them in the past and will continue to hold on to these truths.
Tuesday, December 2, 2008
From a sister's heart
This is Aubree and I am Kasi's younger sister. I would say little, but at this time I am taller. I know that when she is through with her surgery the chances of her being taller than me is possible, and I am glad about that. I am also scared and nervous because of the recovery and I am worried about the results. Kasi is fun, funny, and also nice (sometimes) and I don't want to see her go through this. I pray that Kasi makes it through the surgery and that she won't be scared. I know that God is always watching over us and He will be watching Kasi and taking care of her. Thank you for your prayers....Aubree
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