It’s noon on Tuesday as I am typing this. I likely won’t get it posted until later, as the internet in our room isn’t working well and previous updates have actually been completed on my phone.
I just met with the Neurologist who specializes in infantile spasms. I was able to go in to the back room with him and look at the footage they had collected, in correlation with the button pushing and EEG activity. To give you a little background…
Nolan is wearing EEG leads to measure his brain waves and certain muscle movements, (neck, arm, and face). There are two cameras on him at all times. I also have a button I can push any time I think I see a seizure or spasm and a sheet of paper where I can document what I am seeing.
If he repeats the “tighten and release” movement I previously recorded, that is movement A. Anything else I note needs to be described.
The verdict is in; Nolan is in fact having infantile spasms. He rarely clusters; his are mostly one off movements still. His movements are much more subtle than Landon’s, so you really have to be in tune with what is normal for Nolan. And it seems I am. It was almost weird to watch the video back. It was a bit like watching surveillance footage of someone else.
The video was silent, and had the look of a night vision cam. There was a mom, at 4:30 am. She is feeding an adorable baby, with perfectly kissable cheeks. The baby stops eating, pauses. The mom puts the bottle down and grabs the button. The baby jerks. *push*
That same mom, 9:15 am, cuddling and talking. Baby pauses. Mom grabs the button. Baby jerks. *push*
There were a few more examples. Each subtle, but both mom and baby seemed to know it was coming. And the EEG lines confirmed.
It would have been fascinating to watch…if that mom wasn’t me. And if that adorable baby with the kissable cheeks wasn’t my Nolan having a spasm.
Nolan will follow in Landon’s footsteps and begin Sabril. We are feeling very optimistic about how it will work, and are hopeful it will help further reduce the clinical seizures for both boys as well.
In terms of things to be thankful for, there’s no way I would have been ready to catch Nolan’s activity if we hadn’t already been through this with Landon. Aside from Sunday night’s episode, Nolan’s spasm movements had been very few and far between and easily dismissed as a playful jump or an uncoordinated stretch. But I know more now than I did a week ago.
If both boys had been in on Friday, I would have had the weekend crew for the Saturday review, and missed out on the opportunity for today’s very useful and reassuring discussion with the infantile spasm expert and a chance to see the video.
So if this HAD to happen…I’m happy it happened now and not when we were in less of a position to get experienced opinions, get meds quickly, and make use of great helpers.
One of my prayer requests was for precious smiles. And oh my…did God deliver.
And here are our little guys, looking very similar only a few days apart. Each ready to head home and take on the world.
Janet Weaver said:
Those little smiles just melts your heart! So precious. Thanks for sharing! May God bless all your family! Love You all!!