Tuesday, February 10, 2015

Debbie Downer

Its really hard to play the What if game.  So I try not to do it very often. It’s a downer. 

I have been digging through very old pictures because Tomorrow is Dominic’s 10th Birthday.   A decade.  The baby pictures, and pictures up to age 2 ½ are really hard to look at. Its SO CLEAR that he was perfect – he has NONE of the red flag signs that I now know would’ve given anyone a clue that we had issues. No red cheeks, no gooey eyes, no histamine circles, no w sitting no head banging, flapping, sound sensitivity, constant screaming, etc.  NONE. Until that damn Flu virus activated the latent measles which had taken up residence in the speech center of his brain and over the course of 2 weeks we lost him.

And for 7 years, we have been fighting to get him back.

I’m tired.

We are so close.  SO VERY CLOSE.  I simply do not have time to be tired right now.  We have cleared layer after layer of gunk out of his overloaded system, created new detox pathways and seen lots of things that help get us closer.    I strongly suspect our final answer lies in somehow rerouting the pathways of Dominic’s brain around the injured area.  We saw such great things with hard chamber Hyperbaric that is really hard for me to know that due to proximity and cost that is currently not an option for us.  I really believe if we could do 40 – 80 hours in a hard chamber, we would give him his best chance at becoming truly conversational.

So barring the sudden availability of a Hard Chamber at a price we can afford within driving distance  (or the gift of a place to stay near one and the time  off work and money for dives to do so), this next decade is going to be dedicated to finding another way to create these pathways.  And I am ENTIRELY open to suggestions.  It’s the parent led, grass roots efforts that have gotten us this far, and it’s the same that will get us the rest of the way.

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