So a lot of stuff has been going on with the boy. So I'm going to update.
So - we were living in a bad situation with some "friends" ... our whole family was stressed out, we were basically only sleeping there until we found a place, and we were looking. Then one night, things escalated and we didn't go back. We ended up staying at my Mom & Step-Dad's... and it was amazing to see the kids moods just lift :)
But sickness then ensued. Nathan ended up acting like he wasn't feeling well. (here he is sleeping and cuddling his Mickey)
He also had an appointment with Neurology to discuss his migraines which he had been having again, it seemed. (Hiding from the dark a lot, needing to cuddle/kangaroo, a lot of sleeping....) ... and when we were explaining things to him, the DR said that with Nathan's medical history he was worried about seizures ... so he wanted Nathan's eyes checked, and an EEG done. I had never seen him have a seizure, but I also knew that you can not know someone is having seizures.
Two nights before the scheduled EEG I was sleeping with Nathan on my Mom's love seat. Something weird happened and I actually think he had a seizure that night, I really do think it was. I was about to record it, when it stopped. It is the one and only time that I know of, that it's happened, but he wakes up in the middle of the night all the time - upset - and we don't know why. So who knows.
What happened?
Well... he was sleeping, and he let out this whine, and it didn't stop. Then he would build that whine into a cry and eventually he'd scream, stiffen up completely - like a complete full body stretch, arms and legs outstretched and completely stiff. Then the whole process would start over. Whine, build up to a cry, scream, stiff, whine, build up to a cry, scream, stiff...... I grabbed him and pulled him over on me completely unsure of what o do, he wasn't responding to me, he wasn't answering me or even looking at me like he normally does. So I had him laying on me, back against my chest and belly and I realized while he was doing the whine building up to the cry, he was also trembling. This repetitive process went on for about 3 minutes before it stopped. Then he turned around, looked up at me like "what am I doing on you mom?" He pointed at his pillow, I put him over there, tucked him in ... and he went right back to sleep.
So I called the Neuro the following day, and told the EEG people when he had it done.
When it came time for the strobe lights, Nathan just laughed! He thought it was the coolest thing. He just laughed! Couldn't get him to fall asleep because he falls asleep with his hands behind his head, and he couldn't do that. So he'd just get pissed off.
The hour long EEG revealed nothing, so they want to do a 24 hour one, which is May 2nd. I am hoping that if he is having seizures, that they pick up on it then.
His Autism (PDD) is doing okay. He's still got major sensory stuff going on but he is doing so well in school. He absolutely LOVES it... it's a complete 180 from the school he was in before. The preschool he was in before was very dull, not colorful at all, and just... he didn't enjoy it. I donno what was going on there, but he didn't like it, and neither Dennis nor I did either. Everytime he would go he'd cry. We recently found out that the teacher is no longer working there either, not sure why, but she's not. This new preschool is amazing, so colorful. Very welcoming, which is huge. And his teacher is great. Everytime we tell him it's a school day, he starts jumping up and down for joy. We tell him he gets to ride the bus and he's excited. HE LOVES SCHOOL. Loves it!!
Then he had an appointment with Genetics too. He saw DR. Glass. So we would finally have answers on if his brain issues... and if it was Dandy Walker or Jouberts Syndrome, or something completely different. We were going to finally find out what was going on with his last MRI. He definitely doesn't have Jouberts Syndrome, I guess. And Dandy Walker is questionable, his words were .... "It can be called at Dandy Walker Variant however it is all caused by the Russell Silver Syndrome I believe..." and then said he's rather call it some long doctor word. So he doesn't really have Dandy Walker either, he has an under-developed vermis (in his cerebellum) or missing vermis ... and we also found out he has something called (we think this is what he said) ... Polymicrogyria ... he said that, in a normal brain (which we all know) there is one fold, separating the left and right sides of the brain. In the case of Nathan, along with the missing vermis, he also has a bunch of folds on the front of his brain. Dr. Glass compared it to looking like a "bunch of grapes" ...
This is a Normal Brain
This is a Brain with Polymicrogyria
We are connected with a great group called the Magic Foundation, and they are having a conference this summer (which they do every summer) and we'd love to go. But we just can't afford it. I am debating tying to do some fundraising so that four of us could go, but I don't know if I can do it. I really want to but... I donno....... UGH...
And to end with.... a few photos of Nathan "folding over" on St. Patricks Day...
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