The run down...

Hello every one! We have had a lot of questions from every one, so we wanted to share a bit more about what took place in this hospital stay. So, here is a run down of our trip to Cincinnati. They were ever so kind! They got a hold of a lot of the charting for Joey, mainly from admissions. Their thought process is that first and foremost, they want to get Joey's weight up. they said looking at him, he is extremely unhealthy. Too boney. So, that is NUMBER ONE goal right now. Second, figure out the stooling issues he is having and the lack of ability at this point to gain weight. After seeing his belly mildly swollen, they are confident that Joey has Celiac Disease. They said the blood work is not accurate enough to go on. he will go in for a scope of his stomach and small intestine so they can biopsy and find out what is causing all he is dealing with digestive wise. The third thing they are doing is a genetic work up. They are not convinced that the diagnosis can not be found. They firmly believe it is not that hard to find the issue with the genetic break down as to what we are dealing with. We can say it is just mito, but if we dig deeper, we can treat more aggressively. so, at this point, we continue with mito but will begin a deeper search to figure it out. They are also going to be sending Joey to a muscle doc. they said that even with "mito" diagnosis, he should not be so flopsy-mopsy. So, there is a lot in the go right now. There will be a lot of work up being done and a lot of things that we will have decide on, but I think in the long run, it's going to be better knowing in the end what is completely going on. One thing that may be in the work up is anotherbiopsy. They may send us to the Cleavland clinic to have one of the kids muscles biopsied again. At this point, it may be joey because it has been over a year since his first one. They can do fresh biopsy there with better results than the frozen sample that was previously done and sent off. So, please pray for us. Tons to think about... new emotions we are facing and lots to work through! Hugs to all! -Mindy