Well time has once again gotten the best of me! On the other hand no news is good news.. right?!?! We have had a great summer packed with camping, going to the zoo, playing outside, swimming, bike rides, ice cream and smores. Our summer also brought a new addition to our family, a new puppy named Charlie. He is so full of spunk and energy, I forgot how wild puppies can be.
We had Westins annual check up in April. This went pretty good. He has such anxiety about all of the tests, Drs and machines, but over all he did pretty well. He did have a hip x-ray since we haven't had one since 2013 and that looked good! We also met with the usual, PT, Neurosurgery, Orthopedics, Urology, Physical Med and rehab. All had pretty good reports. Westin continues to be our little miracle, Uro had no concerns, even though Westin is still wet had night, he said its not uncommon at his age to still be in a pull up at night. Everything else is going good, he is dry during the day and goes pee when he needs to. We continue with the daily mirilax and that seems to work well at keeping things moving.
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.
He has been cleared for another year! We will go back in May 2017 where he will see his "team" oDrs again. He will also have neuro-phyic testing done, I guess this is pretty commoon with SB kids. We will also have a wheel chair eval to see what options are out there if and when the times comes to ordering one. 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!
