Will These Doctors Make Up Their Minds?!?

First and foremost, Quinn is doing AMAZING!!!! Absolutely amazing!!! We have her on the jtube feeds at night and are feeding her teeny tiny portions of soft food throughout the day. very, very small portions. Though I know she wants to eat like we do, she understands this new schedule and is doing remarkably well with it. not to mention that she is not as bloated and so probably knows she is feeling well. She LOOKS like she is feeling well. she isn't as pale and tired all the time. She has so much more energy and she is thinking more clearly and talking a whole lot more. It is truly amazing the difference in how she is now and before. And she is requiring less oxygen! So all this is wonderful news. I, on the other hand just want to get rid of all the tubes. So i'm still anticipating our next GI appointment to talk aboutthis surgery option... or if it IS an option. Though we are trying to keep her weight up, i don't think we are actually increasing it. I think we are sustaining because she still looks super skinny. i can see all her bones.

So today, I got into my mailbox and had a CCS paperwork package. CCS is a secondary insurance for medically fragile children. Previously, she was put on it due to her CSID, which was misdiagnosed. Well, we were still on it for GI issues. Now after San Diego discharged her from their clinic, stating that they couldn't find a mitochondrial disorder, I figured that was the last we would hear from them. WELL>>> this package consisted of paperwork for her NEW diagnosis. And wouldn't you know it? Her diagnosis is Mitochondrial Metabolism Disorder. Now, the thing that confuses the crap out of me is how on earth she carries this diagnosis now and that the San Diego Children's Hospital diagnosed her? he SPECIFICALLY told me to take my daughter home and enjoy her and that they coudln't find a mitochondrial deletion and so she couldn't be diagnosed with it. I'm so lost and confused now! I just don't understand this...

I know that CCS requires evidence of the diagnosis in order for it to be actually diagnosed through CCS. They are actually really strict on that. So, what evidence do THEY have that she has Mito? I was told they had no evidence to confirm the diagnosis.

I'ma call San Diego on monday. but I doubt I'll get any information what so ever. CCS requires me to make follow ups through San Diego for this diangosis, but last time we were there, they told us we didn't have to come back. I seriously don't know what to do now...