

Ortho has some concerns with Westins endurance. As he gets older he of course will get taller and heavier and with that comes more weight that your legs have to hold up. With Spinda Bifida of course the lower extremities have the most weakness. Westin has spotty feeling in his calfs and left foot and pretty much no feeling in his right foot so most likely he will need a wheelchair for long distance walking. This is something that people close to us seem to have a hard time unerstanding and grasping. He can walk and run yes, however when hes older and heavier I dont want him to use all of his energy just walking from one place to the next. Studies have been done and people with Spina Bifida that walk use 3 times as much energy as those that dont. Thats a lot! That is one major bonus to the school that Westin is in right now. Its very small and everything is very close. He doesnt have long hallways to walk down just to get to his room. When we looked at another preschool in town Westin would talk to the room and by the time we got there he would say "My legs are out of gas" That just broke my heart. So while everyone one may not agree with this, chances are it will happen at one point or another.
Overall Westin is doing awesome! He has started preschool and really loves it once hes there. He does wake up and tell me that hes not going.. just because he thinks hes missing out on something great at home. He has also gotten taller, I feel like he grew overnight. Its hard to believe how fast he is growing up considering its already been 5 years since we found out about his diagnosis. Its amazing how things have changed in that time, I wish I could go back in time and tell my self them what I know now. He is such a gift! I would change him for the world!
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Hello
We just had a round of hospital appointments. They did a bunch of tests on him and asked me a million questions too. I was able to discuss my tethered cord fears and worries with his NS and urologist. After a long discussion we decided to wait and quietly observe him to see if there are any issues that indicate his cord is tethered. I await the results of the tests. Did he develop tethered cord or not? Hurray for good news. I love getting positive feedback and advice.
Glad you heard only positive updates. We met with a neuropysch yesterday to talk about testing but I was not able to get my questions answered. How long was the testing? What did they do during the evaluation? When can I expect a post evaluation report detailing their findings plus test results? What other questions do I ask?
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