Coming to an end...

While th is trip is now coming to an end in a lot of ways we are just starting. There's so much information to process and so many new things to learn. 

This is what the last set of testing was showing. What it means escapes me at this point and apparently it's going to take a few weeks until we know. This went on for 7 hours almost and the doctor has to look over every section of it and find the patterns within it as well as the randomness of it. 

I do know that she was miserable. That she was sore, tired, upset, scared, and done. Done in a big way to the point that she had stopped talking or even smiling at all. A nurse would come in and she would curl up against us burying her face and holding on tight refusing to acknowledge them hence the reason I canceled the sleep study. She has done amazing through all of this and she had been holding her spirits high up until this point so it just had to be the end of the testing phase. 

All those little tubes were inside her body, the upper probes were 18" inside her as well as the lowers. TJ and I decided the next fellow that came in and said "it doesn't hurt them" should have to undergo it themselves. 

I the coming weeks I'll be posting more as well. There's a lot that we've learned but I need to have some time to digest it all and find a more elequant way to describe how it ties into her as it's been told to us. We have a diagnosis though, solid ground to stand on now after all these years. There are still unanswered questions and she still (unfortunately) the "possible mitochondrial" component as well as some outstanding tests that are not in yet but we have a primary problem now. It makes my head swim and after spending another 2 hours with genetics and another hour with immunology I can't quiet figure out if I understand more or less. 

Thank you before I forget for all the cards and balloons and (City girls) for the stuffed puppy! She read every single one and loved them all. THANK YOU!

All and all it's done and we get to come home. They want to see her back in 6-8 months and there is an intensive PT program they would like us to consider that is this summer that runs for 2 weeks. Will have to think about that one but the great thing about it is it would be with girls her age dealing with the same things. We saw OT today as well and now have a plethora of information to bring home to those respective therapies to help her move forward hopefully instead of staying stagent.  

Today we went to the museum and she did well for the most part. She was able to sit back and relax and loved seeing all the exhibits. They not only know how to do a children's hospital here but a children's museum as well. 

I'm tired and I find myself running out of steam a lot faster lately. I know that the stress on her has been tremendous in every aspect and I know that the stress on TJ and I has been large as well. I can just hope that this month will now bring us a sense of normalcy and our regular chaos. Sunday morning we fly home and that ended up being a good thing as Alana's labs are coming back slightly unfavorable today and we are hoping the elevated WBC etc. is just a fluke moment and not something suddenly brewing. 

I leave you with the final photos of the day. 

And finally, with great love and gratitude to each and every one of you who has taken the time to let her know how much she is loved thank you, thank you so very much.