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.

I have started several posts

but have not been able to finish them. I am sorry. Life has been turned upside down over here. I feel like one of those snowglobes that kids turn upside down and swirl it all around. Yep that is us right now. I came home from kenadie's pedi visit a few weeks back and a nurse at our house... let's call her nurse S, made a few comments. Nurse S said I overheard a convo with your pedi on the phone and she said that they think you are making these things up. WTF?!?!?!?! Yeah eat shit. Well I confronted them about what was going on and of course both of them beat the bushes and dont want to tell me anything. Well a few more days goes by then we have serious matters on our hands.
These people dont understand what is going on. I am to the point now where i want to just dig a whole and take my kid with me and go enjoy our lives. I want to say f the pump, the pulse ox, the EVERYTHING. I can't do this anymore. I keep fighting a wall. Why can't they see this crap when she does it. Why can't i have nurses who report crap right?! Speaking of I am so sick of the home health now. Backstabbing baby wipes. (eh attempt at being nice)! They say one thing and then do another. I am just over it. DONE DONE DONE. How am i supposed to fight anymore for her?! When do you say enough is enough?!

where to start?!

Hello friends and family. I hope everyone is doing well. The ladybug is doing okay. We went to texas on October 20th and had her appt. She had a partial blockage in the tube . The tube was blocked due to a lovely nurse. (sense my sarcasim!). We almost had to stay. We can't do a texas trip without a bit of drama. lol. The GI knew what was going on and he pushed us out of his office to the main hospital quicker than you could say i. We ended up needed a brand new tube. The dye process was horrible but getting the new one was a peice of cake!
We celebrate her 1st birthday. That was emotional for me. It was hard reflecting on the 1st year of her life. I am so happy to have her here with us. But getting here has not been easy at all. We have a battle to face and we will keep marching on. She has a pedi appt tomorrow. Right now her stomach does not want to work at all. So it makes things a bit challenging. Then missy thinks that a low hr is good. Speaking of on her birthday i happen to run into a cardi that has worked on her case and he mentioned a pace maker when she turns 2 or so. Due to her hr being brady and tachy. more for the brady. ;) But it is not a done deal.
Today we had a physcial therapy appt and the therapist said her legs are getting worse. Especially the right one. She asked if she had a brain bleed and i said NO! One thing we did not have at birth! She said she needs to see ortho pretty quickly and get a handle on this. She wanted to know why she was not in hip braces when she was born. Hmm our pedi said she did not need them. But ortho never consulted. However i am with her pedi. We had to work on the heart first! So the missy will be fitted for her orthotics and i have no idea from there on. I hope to pull some strings and get in quicker than later. They tend to have a wait.