Dr s said nothing has really changed beyond lower number. He wants blood draw to be done in 5 week then be seen in 6. He thinks her TAD is what is kicking her blood. He was happy with her then we went for some rest.
Tuesday we seen the Autonomic group. They determined that she is getting worse.:( her vitamin/amino acid treatment has not been helping at all. They dont want to mess with it until we get done with nc. They agree this baby needs some help with her heart. It will give her the best QUALITY of life. N that is my goal. No one is god n they can't tell us how long we will live. But I want her to be comfortable. So. We head back in a month on Christmas break to do some stuff depending on what goes on with nc.
My mind is shot right now. I am tired. Drained. N just ready to relax some. It's hard hearing she is getting worse even though I have been preaching it this. I just don't understand any of this but what am I to do. I was put on this earth to be her mom.
We have the holidays coming n may not even be home for them yet again. Which is small crap. I just want my older girls to get to enjoy them.
One thing I want to reiterate is that not every special needs child has the look. Blood n organs can't talk. N just nc they act out does not mean they are spoiled or brats. It means they have a medical condition. K gets easily over stimulated n then we are paying for it bc her body n brain can't figure how to process it. So it gets difficult.
Published with Blogger-droid v1.6.5
No comments:
Post a Comment