As you all know, Isaiah has always had issues sleeping, first it was falling asleep and staying asleep. Then falling asleep got easier but staying asleep remained a problem. We had about 5 nights since his birth that he slept through the night. Late November falling asleep had been a big problem again. It took him 45 minutes on a good night, two hours or more on a bad night. He was so tired, he wanted to sleep but his body wouldn't let him. I massaged him before bed time, brushed him, gave him bear hugs. We've used the weighted blanket but nothing seemed to work long term. When he finally closed his eyes, his body was still restless. So he tossed and turned until finally his body gave in. Not only was it hard to watch, it was also exhausting. Obviously if Isaiah doesn't sleep, I don't sleep.
My biggest concern was possible seizure activity. It always is. And even though so far nothing showed up on EEGs it never stops being a concern because you just never know when a seizure might sneak up on you. For the past half year I've been sure Isaiah's been having so called absence seizures. It wasn't until December 6th that I had someone else witness them and now I am certain. That day during Occupational Therapy Isaiah was in the middle of an activity when he suddenly stopped and almost froze. My first thought was he was doing a number 2 because for a toddler that requires all of their attention and focus, lol. When he didn't respond to his name, I checked his diaper which was clean. What was odd was that he didn't move an inch when I checked him. His therapist looked him in the face and called his name as did I, nothing. She touched his face, nothing. After what seemed forever but really was just a good 30 seconds, he snapped out of it and it was like nothing happened. It's scary and devastating because there's nothing you can do in that moment. We talked to his pediatrician about it but again the EEG results from last time were just too good to suggest medication and since he had a stare that I reported that was not an absence seizure, he just informed the neurologist but didn't suggest anything else. So now we'll be using a journal to write everything down with dates and times, etc. It's the only way we can determine what our next steps need to be. I am thankful we haven't dealt with any grand mal seizures since his birth but I'm afraid that this was the prelude to some in the future.
It wasn't the only thing that had me occupied, Isaiah was measured for his SMO and UCBL. For those of you who are not familiar with the different kinds of orthotics, this is an SMO and this is the UCBL. Isaiah's right foot has been pronating so badly there's no way around it anymore. Many of you will remember me mentioning him needing one a long time ago but what does a mom know! Hopefully, he'll get them soon. But that also means adding another appointment to my already full schedule. He will pick up PT again to make sure everything goes well with the orthotics. So if you see a scatterbrained mombie running around, that's probably me!
I still owe you guys Isaiah's birthday post, homecoming pictures and Nia's birthday post....I'll get to them soon. At least they will all be much happier posts!! Thanks for reading through all this and for following us on this journey!
Love,
