Welcome to Rayden's page. Here you will find a story of our sons journey with Spina Bifida. There have been many challenges and struggles through the years but it's been worth it! I have tried to keep this blog updated. It might be easier to navigate by using the side bar and looking for specific dates or posts. You can even use the search engine for something specific. I welcome comments as well.
Feb. 25, 2019--10 1/2 weeks post surgery, Rayden is finally back to school. He was so used to being home with momma that he really didn't want to go back. Adriana Rosado, PT, allowed him to 'work' on the wheelchair so that eased the transition some. His brother, Alex, also attended for a little while just to make sure he didn't cry too terribly. I was shocked to find that Rayden had a fabulous transition and only cried for a second. He had a great first day back and was happy to see all his friends and teachers.
Feb. 26, 2019--Rayden had an appointment with his opthomologist, Dr. Grace. Rayden's optic nerves are still swollen (they will always be like this due to hydrocephalus damage) but she believes some of his optic nerve fibers are actually lost. The only test to prove this requires Rayden to be PERFECTLY still (not really age appropriate!) She wants to strike an all out 'war' against his vision while he is still growing. For the next three months we will be patching again for four hours a day, and adding glasses for astigmatism. Although his vision is 20/40 in the right eye and 20/70 in the left, she believes his issues are actually coming from his optic nerves and there is really nothing we can do about that. She is saying that the amblyopia (lazy eye) should respond and get better with the patching and glasses over the next three months. If it does not, she believes his issues stem from the optic nerve damage that happened when his pressure was extremely high in his brain before birth.
March 4, 2019--Rayden had an appointment with his Orthopaedic Surgeon, Dr. Vergun. She said his x-rays look fabulous and she is extremely impressed with his progress. He is not only standing, but actually taking a few steps while holding my hands. He was only expected to be balancing on his legs by now, not walking! She UNDERestimated this guy! She loved seeing those straight legs and flat feet when he was taking steps. We discussed how far he has come and how much work she has put into this little fellow. The only thing she mentioned of concern was the left foot was getting a little tight and she doesn't want any regression. Therefore we are needing to do stretches daily. We are also continuing to wear his AFOs 24 hours a day, yuck. But that's a small price to pay for what all he has been through to be able to walk without cables and hip dysplasia. She released him to walk full blast and soar to his potential! When he heard that he refused to get back in his stroller and walked all the way from the exam room to the van! This is one ABSOLUTELY AMAZING, BLESSED, MIRACLE CHILD!!!!
