Feeling better!

Hello all. So I just had a talk with the hh agency. I feel so much better. I had posted previously and irritated based on just a nurses comments. So now I do feel better. Also I am looking for a support program here locally for chronically ill children. I definitely need that extra support. As for the pedi.. Well today we got new orders and NO i did not know about them. I wish she would tell me these things before my home supply company does! That is not cool. She wants to change her formula back to alimentium. NO NO NO NO NO! She has done amazing on elecare. Less fussiness, less everything. Why mess with the potion if it is working?! I know she is over 12 months now and they would like to see them on a different formula. But come on.. she is doing good. I swear sometimes they just like to see if it is going to mess her up. I know they dont but that is how i feel!
Ms K is doing descent this week. Few breaks off of her pump bc of her tummy. Tonight we had about 50 cc left in there after 3.5 hrs of having a bottle. Yah.. not yummy! I could tell bc her tummy was distended then i asked her nurse what time she last ate she said about 430pm. So nurse took off the extra off of her tum tum and she was ready to head to bed. We had one instance where the kiddo's hr went down on sunday. But we really do have a wonderful night nurse. Lord bless her soul. We wish we could kidnap her so we could have her all of the shifts. ;) I like to call her Gramma D. Funny thing is when i first met her she was very rough and i was nervous for her tobe in my house. But after giving her a chance.. Now we would be lost without her. She has been our main constant through all this mess. Lord do give her an extra gem in her crown. Plus she puts up with my venting at night. :D.
So as for the diva.. we are waiting on going where ever we are going. As of right now it is looking like ohio or nyu. Me personally.. I kinda would like to go to new york. Never been.. So it would be a nice thing. We are trying to get a definitive answer on the diva's diagnosis. If indeed she does have t his. What are we supposed to expect. What is her prognosis. I would love to know. But only God knows truely what our prognosis is anyways. ;)
We are on this horrendous rollercoaster ride right now. I have to say thanks to those who are supporting us through this whole endevour. Somedays its about all i have.