We started off the day with a rough start- vision therapy at 8:00 and Grayson was having some sensory issues- he didn’t want to play with any of the toys his teacher brought, and all he wanted to do was swing. His teacher says G has a major need for motion, as his vestibular system’s needs aren’t being satisfied because of his body’s inability to move correctly for his age. We have found that G is happiest in motion. He is technically less than 5 pounds away from the weight limit on his swing- anyone know anyone at Fisher Price who wants to make me a super-sized infant swing? I can’t find any special needs swings that are close to it.
Later in the morning, he woke up screaming from his nap with another seizure “episode”- doing the leg thing again. Ugh. So far I haven’t seen any change since we upped his meds on Wednesday- his clonus is still bad, and he’s still so stiff.
I had a wonderful lunch today with two amazing moms on the Mito journey. One of them is a great friend who I’ve learned more from than any book, doctor or website. The other happens to be the founder of the school Grayson will be attending next year. I am even more excited for G now- and can’t wait to see the progress he will make there!
While I was at lunch, G hung out with his “Aunt” Sherry and her weenie dogs. She texted me this picture while I was gone- doesn’t he look so sweet and snuggly?
Last week, I got a call from the Mitochondrial Disease specialist that they had an opening in their schedule for this Friday and asked if we wanted to the appointment. Ummm…yes please! Our original appointment was scheduled for mid-July so this is great news. I’m excited about the appointment, but I’m also not expecting it to be a life-changing, earth-shattering appointment. We do not yet have genetic proof that Grayson has Mito, and the results of the test we are having run will not be in until late June. However, I am very interested to hear this doctor’s insights on Grayson.
That’s all I have for tonight- I feel just about as tired as my sweet little 5:30- bedtime boy right now.