Kynadi, Brooklyn and I went on a walk the other night. It was a bit chilly outside so I told Kynadi she needed a jacket and that I needed a hat to cover Brooklyn's ears. She then insisted that she needed a hat too. I thought it was cute so here they are displaying their hats.
Monday, October 15, 2007
Princess Shoes
Grandma bought Corbyn and Kynadi some princess shoes that light up. Kynadi was so excited about them. 
She has this shoe obsession anyway, so even though these ones actually fit her she loved them. She loved them so much she had to sleep in them. It was so cute. I had to take pictures.
She has this shoe obsession anyway, so even though these ones actually fit her she loved them. She loved them so much she had to sleep in them. It was so cute. I had to take pictures.
Sunday, October 14, 2007
Kynadi and her brace
Well, I haven't updated my blog lately because it seems like so much has been happening. We found out about a month or two ago that Kynadi has a pretty bad case of Scoliosis. She has alwasy kinda held her head crooked, and I had asked a doctor about it before but he said she had something that I didn't need to worry about and that she would out grow it. Well, that was at her 18 month check up and since then I have noticed her spine is visibly curved, so I talked to her new doctor about it at her two year check-up. He knew right away what the problem was and we got her into the orthopedic surgeon a week later.
The orthopedic surgeon here said he had never seen a case like her's in such a small child. In fact the nurse didn't know what to do for a robe for her to dress in so Kynadi just got covered in a folded sheet -- Poor kid -- she's definately a special girl! Anyway, the doctor told us we needed to see a regional specialist and they got us into primary children's quickly.. So we had to make another trip to UT (it seems like we are always going there).
Well, the doctors at Primary Children's looked at her and told us they think it is a pretty agressive case and they didn't believe she would out grow it, like some will. First they wanted to make sure that her development in the spine and spinal cord were normal. They also wanted to make sure her kidneys were ok since there can be a link between Scoliosis and kidney and heart problems. To be sure she was normal in these aspects they had us schedule her for an MRI -- which I was nervous about because they had to sedate her -- just seems scary I guess. The MRI was scheduled for a week and a half later and all went fine there. The worste part was when they were putting the IV in her they made me hold her. They had us in a hugging position basically and tied her hands to the chair I was holding her in. She hated this whole process, and kept crying, "I WANT DADDY!". I know who will hold her next time! This whole thing was almost as hard on me, but I was tuff and held back the tears.
Well, since everything else is good, the doctors told us there are basically two options. First we have her in a brace that she has to were 18-20 hours a day. She will have to wear this for two months and then we go back to Primary Children's in November for x-rays to see if it is helping. If it is helping she will continue to wear it for years while she is growing. If it isn't doing anything I don't know how much more time they will give it to work before they start the second option. The second option would be pretty hard on us all. They would have to do a pretty intensive surgery to put a straightening device in her back. Because she is still growing though, they would have to preform a less intensive surgery (but a surgery none-the-less) every 6-9 months for the next 12-13 years. I'm not sure I could handle that. Being at Primary Children's and seeing sooo many sick children just makes me grateful that Kynadi has something that isn't life threatenging. I can't even image how hard it would be to have to go through surgery after surgery like soo many other children are doing. Seeing such small children going through such big obstacles is humbling.
A
nyway, Kynadi has her brace and has been so good with it. We had tried to talk to her about it before she got it and get her excited to have it. I think it helped. It is made of this hard plastic and I can only imagine how uncomfortable it is. But she is a trooper and they only time she has really complained about wearing it, is in the car during our trips back and forth to Utah. Like the car seat isn't uncomfortable enough by itself, so I can't blame her. After we got it, we tried to get her even more excited and I took her to the store and she got to pick some stickers out to decorate her brace with. So here are some pictures of her posing in her brace. The one with her on her tummy is how she has to lay for us to put it on.
This last one I took is of the little "dress" they had her wear when they were measuring her for the brace. It was so cute all tight and snug to her body. The lady taking the measurements told her it was a dress so she thought it really was. It was so funny, so I had to take picture to remember it.
The orthopedic surgeon here said he had never seen a case like her's in such a small child. In fact the nurse didn't know what to do for a robe for her to dress in so Kynadi just got covered in a folded sheet -- Poor kid -- she's definately a special girl! Anyway, the doctor told us we needed to see a regional specialist and they got us into primary children's quickly.. So we had to make another trip to UT (it seems like we are always going there).
Well, the doctors at Primary Children's looked at her and told us they think it is a pretty agressive case and they didn't believe she would out grow it, like some will. First they wanted to make sure that her development in the spine and spinal cord were normal. They also wanted to make sure her kidneys were ok since there can be a link between Scoliosis and kidney and heart problems. To be sure she was normal in these aspects they had us schedule her for an MRI -- which I was nervous about because they had to sedate her -- just seems scary I guess. The MRI was scheduled for a week and a half later and all went fine there. The worste part was when they were putting the IV in her they made me hold her. They had us in a hugging position basically and tied her hands to the chair I was holding her in. She hated this whole process, and kept crying, "I WANT DADDY!". I know who will hold her next time! This whole thing was almost as hard on me, but I was tuff and held back the tears.
Well, since everything else is good, the doctors told us there are basically two options. First we have her in a brace that she has to were 18-20 hours a day. She will have to wear this for two months and then we go back to Primary Children's in November for x-rays to see if it is helping. If it is helping she will continue to wear it for years while she is growing. If it isn't doing anything I don't know how much more time they will give it to work before they start the second option. The second option would be pretty hard on us all. They would have to do a pretty intensive surgery to put a straightening device in her back. Because she is still growing though, they would have to preform a less intensive surgery (but a surgery none-the-less) every 6-9 months for the next 12-13 years. I'm not sure I could handle that. Being at Primary Children's and seeing sooo many sick children just makes me grateful that Kynadi has something that isn't life threatenging. I can't even image how hard it would be to have to go through surgery after surgery like soo many other children are doing. Seeing such small children going through such big obstacles is humbling.
A
nyway, Kynadi has her brace and has been so good with it. We had tried to talk to her about it before she got it and get her excited to have it. I think it helped. It is made of this hard plastic and I can only imagine how uncomfortable it is. But she is a trooper and they only time she has really complained about wearing it, is in the car during our trips back and forth to Utah. Like the car seat isn't uncomfortable enough by itself, so I can't blame her. After we got it, we tried to get her even more excited and I took her to the store and she got to pick some stickers out to decorate her brace with. So here are some pictures of her posing in her brace. The one with her on her tummy is how she has to lay for us to put it on. 
Subscribe to:
Posts (Atom)