Back to CHEO we went today.
Before we could see our neurologist she sent us for an EEG. We had to bring a sleep deprived toddler in at 8am and then wrestle him back to sleep, so they could test his awake, falling asleep, sleeping and wakeful states. 7am this morning was rough all around. We went to Chapters and Loblaws to keep him up past 10pm last night.
The little Hedgehog was a super champ. Not one cry or flinch while the technician measured his head, marked it with crayon and put the nodules on. She said he was so great we could come back anytime. No thank you.
We reviewed the MRI & EEG with the neurologist and resident and know that both are completely normal. Whatever is causing this gross motor delay and gait issues cannot be seen on either test. Huge relief, and a huge unknown.
After going through Hedgehog's changes and improvements since May, we received three new referrals. Two to physicians and one to a department that will coordinate occupational, physical and speech therapy. One of the physicians will test nerve and muscle connections, the second is for neuro-genetics. This is the scary one, as we figure out of this is genetic.
Today we checked more things off the list, but grew the list at the same time. I came home tired, with a headache and ready for the nap. Luckily, everyone else was ready for a nap too.
Until the next update!
Not fun doing all these tests, but at least hopefully you'll get some answers. We were told we had a year's wait to get into CHEO testing. *sigh*
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