Sunday, August 18, 2013

Well, we are finally getting answers....

Its been a little over a year since Sy was put in the hospital for failure to thrive and we are finally getting some answers on what the hell s going on with him.  First theres the low production of growth hormone.  Now I find out that hes got something called alpha 1 antitripsyn disorder.  I'm not entirely sure what that means yet since I haven't really researched it much because I don't want to scare the shit out of myself, but I do know that its better than it could have been but worse than I would have liked for it to have been.  I also know that this is the reason his liver enzymes are never right and why his white cell count is always low.  I'm calling his genetics Dr tomorrow to make an appointment to discuss what this all means in the short and long term.  I'm kind of scared to know the answer but I need to know.  I'll update with what that is when I find out.  He goes to the ped and has therapy tomorrow and his therapy evaluation is tomorrow to see if we are going to increase it or leave it the same.
Now for the scary news.  He had, what we believe was, a small seizure a few nights ago and possibly another one yesterday while he was napping.  Both have been while he was sleeping and he was perfectly fine after other than being hard to wake up.  His ped is scheduling him a test( I think he said an eeg) and sending him to a neuro Dr to be evaluated and see if they can figure out what the hell is going on now.
I have come to realize when it comes to him there will never be an end to visiting Dr's and at the moment there is no cure for what he has going on.  I expect him to have things happen that Dr's may or may not be able to explain right away and that we need to take it one day at a time.  This is all new territory to me and its terrifying some days.  I wasn't expecting to ever get an answer on what was going on with his liver enzymes and when we went to the GI Dr last week and he dropped that in my lap I was so shocked that I didn't know what to ask or what to say.  But in time things will get easier.
Hes walking!!!  He took his first steps about 3ish weeks ago and has taken off and is doing really well with it.  Far better than his therapist expected him to do so soon.

Well, thats all for now.  Its chilly out here and I want to go in the house and sit in my comfy chair and relax a bit.  Tomorrow is going to be a busy day.

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