So you may be wondering if we've noticed any changes since Will started the drug. Nope! We don't anticipate seeing anything. We simply hope that the brain scan on week 13 will show improvement.
His wonderful OT, Risa, did chew therapy tonight with Will and he was able to say her name Re-sa really clearly. I'm sure Aunt Lisa will be happy to hear that he can say "Le-sa" now too. :-) We'll have to make a phone call soon. Speaking of chewing. We had a big milestone tonight!!! Will ate a Ritz cracker tonight. He took a clear bites, chewed, swallowed and didn't choke!
This is a HUGE milestone for us. One of the classic symptoms of a mito disorder is hypotonia - poor muscle tone. That means even muscles in his mouth. Chewing is not just crunching food up - that's actually called munching :-) Chewing is defined as moving food laterally from left to right in your mouth and then munching on each side. He's a pro now at munching and the chewing is getting less sporadic and much more frequent.