If you know my family at all, then you know that Kalysa is our little miracle baby. She was born 14 weeks early and was in the NICU for 10 weeks. While she was there, the doctors try to prepare the parents for just about anything.
She could be blind
She may have serious mental delays
She could be severely handicapped
There is no way to know if she will ever be able to do anything blah blah blah
Well our Kalysa has perfect vision and hearing. She is smart as a whip-and I'm not just saying that either! She is as close to being a genius child if there ever was one-and there have been at least 2 others that I know about:) ANYWAY, the only long term effect that we have had is with her legs. Apparently premature babies often have stiffness in the muscles. We did stretches and exercises with her ever since she was a few months old. She had an occupational therapist come to the house twice a month from the time she came home from the hospital until she was 3. Kalysa's left leg (calf muscle) has always given her trouble and she walks on her toes. We have had splints and they helped to stretch the muscle and then she would go through a growth spurt and that muscle would tighten right back up. The next step was botox injections and casts. The botox was injected directly into the muscles. After just a few days the muscle was paralyzed and relaxed and she can not walk on her toes even when she tries. Then she would get a cast put on the foot to pull the foot up and in turn stretch the calf muscle. After a week, the cast was removed, the foot pushed up more stretching the muscle more and a new cast put on. That is done 3-4 times and then more splints to help maintain the stretching. Kalysa has had that procedure done 3 different times. Each time it would work for about 4-6 months and then gradually the muscle would tighten back up.
She went to see her specialist a week ago so that we could discuss the next step. The next step is surgery! The doctor says that the best surgeon that he knows is from the Shriner's Hospital in Shreveport La. He comes to OKC twice a year to see patients. Her doctor is going to do his best to get her an appointment with the Shriner when he comes to town in April. If she is accepted as a patient, they usually do not do surgery until the kids are between 7-9 years old. Since she would still have at least another year, she is going to have the botox and casting one more time to see if we can make any more progress on the left leg(the 1st 2 botox sessions were on both legs but the right leg has gotten better.)
Please keep Kalysa in your prayers. She will have her botox shots this Friday(tomorrow!!) and then start the casts about a week after that. They are very painful shots but we have chosen not to put her to sleep. They only last a couple of minutes and she has always been a trooper! She usually doesn't even cry but she does let the doctor know "YOU HURT MY LEG!" The casting part she loves! I suspect that they feel good because she is not on her toes and the pressure is off the muscle. She calls them her boots, loves to pick the colors and can even tell the therapists exactly how to but them on.
Also, please pray that the Shriner doctor will be able to take her as a new patient. He is supposed to be THE BEST. This type of surgery is all he does so he is an expert. Also, if she can go to the Shriner hospital, there will be no charge to us. We will have to take a trip to Shreveport but they will help us with a place to stay for any days she has to be in the hospital. That would be a real blessing! Thanks for praying for us and our Kalysa!!
T ~ Tests
15 hours ago