What we know, what we don't yet know.... - Aiden update #3

Hi everyone,
Well, here we are, Sunday night. We have only another day and a half until our appt. with the pediatric neurologist. This time can't go fast enough.

On Friday afternoon we did find out some good news. Aiden's results for his MRI and Bloodwork came back. They all came back normal. This is great news as it rules out any physical abnormalities in his brain such as tumors, etc, which could have been life threatening.

This also further leads us to our working theory that the EEG is where our answers lie. I have been doing a bit of research about Complex Partial Seizures (the disorder the EEG tech told us about) and while we are in no way doctors and in a position to diagnose, boy does he match up with what is explained under that disorder.

Aiden was doing a bit better with his language at the end of this week, but once again on Friday night/Saturday morning, he had a VERY long sleep. He went to bed at 8pm and woke up at 10:30am. We are starting to realize that his "bad mornings" are going to be after these long sleeps that he's been having lately. He woke up and basically had his ticks, or what I have now learned are called Automatisms for at least 2 hours straight (I was alone with him because Will and Anna were at the Vet). He was clearing his throat/swallowing, blinking his eyes, biting his lip and curling his tongue and now a new "tick" of flinging his arm involuntarily. I tried to keep things calm for him during this time so he could calm down a bit (but I was freaked out, I'll admit it). After about 2 hours he did calm down, and while he "ticked" throughout the day.. it got a bit better after that. By nighttime he was happier and playing. Still not a lot of talking, but at least he wasn't constantly ticking like first thing in the morning. Poor thing. Today he has been ticking on and off, but relatively happy, and has been using more words than he has been.

Well that is our Aiden update... for now. More info to come Tuesday afternoon. Please send us good vibes for a diagnosis so we can help our little guy!

Anna has been such a trooper through all of this. I know it can't be easy for her to not only see these changes in her little brother, but also see her parents worried and quite consumed with this right now. On Friday night my mom came over and spent some 1:1 time with Aiden, and we took Anna out on a date to the movies. It was nice to spend some time with her, and relax. :)

Also, Anna has recently expressed a strong desire to go to Sunday school and learn more about being Jewish. This is not something we have pushed her to do, but something she came to us about. So, of course to embrace this.. we looked into the newer congregation that is in East Orlando and Anna has happily begun religious school to learn Hebrew and jewish traditions. She absolutely loves it, loves her teacher, and the new friends she's made there already. We are so proud of her!!!

That is my update for now. Good news, and not so good news, but these are the days of our lives.... ;) Keep praying!

Love, Holly