Andrew seems to be doing pretty well after a rough spot in July. He must have had a major growth spurt in their somewhere and toward the end of our trip to Colorado he was complaining of a great deal of pain, even to the point where he wouldn't walk and wanted to be carried. I noticed that he seemed to be limping/falling more too. I called his physical medicine specialist and we immediately began adjusting his dose of
baclofen, which is for spasticity management. It was a little scary for me but over the course of a few days we went from 1/4 a pill a day to 2 entire pills a day, That's an increase of 800%! But he soon began to feel much better and was sleeping and walking again, Thank Goodness!
The doctor was able to work him into her schedule and saw him not long after we got home. His spasticity in his left ankle has dramatically worsened over the last 6 months. He was once able to get 15 degrees of movement past neutral but now he cannot flex his ankle that direction at all and is developing a
contracture there. There are really only two options,
botox with serial casting or tendon lengthening surgery. Ideally you push this surgery off as long as you can because it can only be done a few times so we have no choice but to go for another round of Botox and casting.
We saw good results last time and hopefully will again. Although I still have a lot of reservations about injecting my baby with neurotoxins which haven't been studied long term and are off label for this treatment, but I'm going to trust his physicians and in God to do the best for Andrew.
So in October we are scheduled for a sedated procedure, which will be a huge relief for me because in the past he was always awake and suffered some emotional trauma through those ordeals, requiring 4 adults to restrain him despite him taking verced to "relax" him. YUCK!
A week after the injections he'll start his weekly casting process for 6-8 weeks. I'm thankful this won't be during the summer so he doesn't miss out on the pool, but considering he brings home a bucket of sand in his shoes from school everyday I'm a little worried about how we will manage preschool 5 days a week. They don't really have a sand box they can tell him to stay out of, it's more like half the playground is a beach/sand hill. This will be interesting!
Thanks for loving and praying for my little survivor!
