Wednesday, November 27, 2013

One Week Later: Update on Ainsley Kate

It sure seems like a lifetime has passed in the course of the past seven days.  I have certainly experienced enough extreme emotions to last me a lifetime.

We have been seizure-free for 4 consecutive days now!!  Praise the Lord.

Over the weekend, even though she wasn't experiencing seizures, she was just like a little fussy zombie baby.  No eye contact, no smiles, just mostly sleep and crying.  She was held at all times, and was still either crying or asleep.  She wasn't eating very well.

Every day, though, I have seen small improvements.  On Monday, Caroline got her to smile for a brief moment.  We had a couple of maybe 10 minute stretches where she was interactive with us.  This continued through Tuesday morning.  Tuesday afternoon, however, it was like a switch flipped!  She woke up from her afternoon nap much closer to her normal self.  She saw in her bouncy seat while we ate dinner without protest, she was making great eye contact, and she wanted to be swaddled and put down for bed like she used to.  I wouldn't call her jovial, but she was much calmer.

Today has continued in this manner.  She's definitely not her old smiley self, but she is more awake, more aware, and at least not fussing constantly.  She is not in any mood to play, but I will take it.

Normal EEG

Hypsarrhythmic EEG

When you see what was going on in her little brain 24 hours a day, it is no wonder she was not at all herself.  Crazy chaos was reigning inside her skull.  All the time.  This is the reason many children with Infantile Spasms either fail to progress developmentally or actually regress.  They cannot continue to develop when their brains are functioning like this.  Often it cannot be controlled, or takes trying a few medications to find the right one to control it.

We go back for her repeat EEG in 6 more days.  We are praying for a much-improved or completely normal brain wave pattern!

1 comment:

Anonymous said...

You are an amazing mother. Hang in there. Our families prayers are with your precious little angel. God bless.

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