Helping Noah

We had our long awaited appointment today with the pediatric neurologist for Noah.
I loved her. She was patient and spent over an hour with us. Noah wouldn’t let her near him but she was able to assess him a little by watching his behavior and by watching us interact with him. She basically took a lot of info from me, and from his IEP, progress notes and a letter from his home teacher about her concerns.
He’s got a lot of testing ahead which I’m anxious about because he has severe “white coat syndrome” and I hate seeing him so terrified.
He will need a brain MRI, urine test, lots of blood work to test chromosomes, lead, gluten sensitivity and more, and an EEG. How are we going to get 20+ leads on to his head, and keep them there long enough to get some feedback??
We will have to sedate him for the MRI so we decided we will have them put the leads on his head for the EEG while he’s sedated. And pray that he doesn’t flip out when he wakes up.
The dr wants to see if he has seizures while he sleeps that may be interrupting the brains ability to remember things that he has learned when he’s awake.
Because his Autism was a regressive onset ( he was developing perfectly up until 18 mos) she said there’s a possibility that seizures while he’s asleep could be the problem.
There’s no way to know by looking at him because they wouldn’t be the type of seizure that causes convulsions but they may be interrupting his sleep. Hence, the 2am wake up on most nights.

So, that’s what we are up to these days
Sent from my iPhone

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Noah

Sweetest, gentlest little lamb. His name of Hebrew origin, and the meaning of Noah is “peaceful” Also, “comforter“, or “wanderer“. It also means long-lived.

“PEACEFUL” … Corey and I said he was the best baby in the world, so well behaved and quiet. He would sit for hours and be content with one or two toys. One time he sat next to me on the deck and played with pine needles for 45 minutes, I was relaxed and enjoying the peace. But something gnawed at me that it wasn’t normal. He would gather them and sort them and put them in piles only to move the pile to the other side and start all over.
From the time he could sit up and play he would “hoard” his toys by putting them all to one side, or behind him and then shuffle them to the other side.
He started doing the usual “arms up” when I would say “how big is Noah?” and he was babbling at 18 months, saying, Da, Ba, car, Yay! and clapping hands.
“WANDERER” …His words were coming and he was doing great, he just seemed a little scattered. He wouldn’t look at us if we called him, especially if he was watching t.v. or playing. I knew his hearing was perfect. He would spring up in his crib at the slightest noise. At this point his vocabulary was growing appropriately and Andrew said nothing. But Andrew could probably cook us breakfast and remove all of the screws on the hinges of his door. I would walk into the room and say ” Noah!” and he would not look in my direction, I would have to scream or tap him on the shoulder to get his attention, sometimes he would look around me instead of at me. I still thought it was just that he was engrossed in what he was doing. But not really….
I was having Andrew evaluated at 18 month for Speech and asked to have Noah evaluated too. when I mentioned the way Noah played with his toys thw therapist said, “oh he’s probably just hiding his toys because he is a twin”.. she was a genius.. They both did not qualify due to the criteria for their age.. “Call back when they are 2. “