Well, after further examination, the UCLA doctors have said no to botox for Casey’s legs. We were very disappointed and will most likely be going for a 3rd opinion, as we still feel it would benefit Casey from talking to other parents/doctors. UCLA’s main reasoning is that the large muscles in the leg don’t appear to be causing the stiffness – they are distinguising between “spasticity” where the muscles are holding the entire limb stiff, and “rigidity” where the joint is locked due to other reasons. (i.e inflammation, bone problem, neuro…). When we know more we’ll post it but unfortunately for now it’s no botox.
On the other hand, it looks like hyperbaric treatments will start Monday, October 23rd at five times per week, as long as her ear tubes get placed without any problems (this coming Tuesday). The facility we found in Santa Monica was founded by Ed Nemeth after an amazing story with his own daughter.
Marty will get to be in the chamber with Casey, but we won’t be able to take our suction machine into the chamber as electrical components add a fire hazard with the pure oxygen content. We are trying to find a good manual suction pump with no metal parts. If we can’t find anything, we’ll just use one of those bulb asiprators, but we really should have something better just in case. Decompression takes 7 minutes (anything faster would be unsafe), so in case anything happens, Marty needs to be able to take care of it for at least that long.
Here is a good FAQ on hyperbaric treatments in case you have questions.
Casey’s theratog suit came in this week and she went to Footprints to get fitted. She is now wearing it every day to help with her legs and body posture . I have posted a video of the fitting in our video gallery if you want to have a look.
Casey did see her first big Hollywood star this week when we bumped into John Cusack at one of her doctors. He is one of Marty’s favorite actors and we haven’t seen anyone new in a while (other than Diane Keaton all the time at the pool), so it was pretty cool.