Day 5 – we’re still here

Not much changing other than many staring spells today. I pressed the button a lot and we’ll see what the doctor has to say about it. Of course the Tech’s came in today wanting to change the leads on Ryans head. I disagreed as if they are still picking up what they need so I decided we didn’t need them moved or changed around. They went on their merry way.


Ryan’s been really active today – in that I mean he’s been having a lot of staring spells. I have hit the button at least a half a dozen times and its currently 3pm. (It will be later by the time this message is sent.) He’s exhausting his mama for sure and I’m hoping its almost time for a nap because he’s been really active physically as well!! So much so that I didn’t take many pictures at all today!!

He’s been eating really really good and loves the milk shakes. I hope he doesn’t expect them at home, however they are delish!!

Dr. H was in and of the 8 times I hit the button earlier in the day, only 2 had slowing and spikes. He also told us he was seeing spikes on the right side as well. Not good.

Ryan didn’t get a nap and with a visit from Aunt Beth and grandma later this afternoon, he wasted a lot of good energy along with a bunch more button pushes. He ate a wonderful dinner and was passed out by 8pm!!

Yay! Good sleep for mama too hopefully….


Thank you for loving this flexible boy of hypotonia!


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