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.

As always comments are always welcome and please share my page with our friends <3

Update on little man

OK again I'm on from the phone and at this point I am trying to catch up on all the blogging i have wanted to do but not had time for.

For those of you that have been following my Sy saga here is an update for you.
We went for a long growth hormone test last week to see what his hormone levels were because the times that they checked it it was so low they couldn't detect it. He wasn't allowed to eat after midnight the night before the test through until it was done,thag was the worst part because he eats nonstop. We got there at 630am and checked in and went to a room on the 7th floor where they put in an IV to draw blood and administer meds. I have to brag and say he didn't cry at all when they stuck him twice to get it started. Yay Sy!  They took 3 tubes of blood and left. Then they started the first Med which was to jump start hormone production. They drew blood every half hour while we were there and at the 1 1/2 hour mark they gave him a ssecond Med,and I cant rremember what it was for. Up j til this point he was doing great. The second Med made him sleepy and he was hungry because it was 1030 and he hadn't eaten yet so he got PISSED. He was finally allowed to eat at 1130 and we got home around 1. Overall he did amazing but it really sucked to hear him screaming and not bbe able to do anything for him.
I got the results from the test the other day and of the 12 blood draws 11 of them were low and ONE was in the grey area so they don't want to start treatment. I get that because once its started his body won't produce it on its own and they want to wait to ssee if he will start making it without treatment first. So we go for the test again in 6mos. In the meantime we go for an MRI later this month and make rounds to all his drs again to see if they can come up with something else. In the first 2yrs of life growth hormone doesn't play a major role and growth is based more off of nutrition than anything. Which is leading the endocrinologist to think there may be more to whatever is going on than just a hormone issue. *sigh* one day one of these drs will figure it out and get it all taken care of. At least that's what I hope will happen.