So plans have changed...again...instead of going to Cincinnati, since insurance wasn't approved for transplant or GI consult we have decided to go to Childrens Hospital of Pittsburgh instead. I have heard it is a great hospital and insurance approves...which means a lot. The dr's and hospital social worker are all working on getting him up there. He finished his antibiotics tomorrow, and will stay over the weekend to be observed then hopefully early next week we will drive up for the consult and admit to get him evaluated. The thing about Pittsburgh I am looking forward to is they have a Mitochondrial center as well, so at least we can get that testing done while we are there. His genetic dr here has done some broad testing but no specific Mito tests yet but since it is a big possibility, I think the sooner the better would be nice on the testing.
He has been doing pretty good today, only a few meltdowns....I am really beginning to wonder if he has this disorder called sensory processing disorder...he seems to really struggle with some sensory issues and gets a overloaded a lot causing big meltdowns. He also doesn't like stuff on his hands, has to have his sleeves pulled down on his shirts, over sensitive to loud noises, is easily distracted and much more but I will ask OT about it when they come by. His dr ordered PT and OT to come by and check out his issues with walking and muscle pains right now. He doesn't want to walk anymore and if he does he is very wobbly so hopefully they will have some insight.
And, yet again..I have said it thouand of times...I love his his Pediatrician and his entire office!! I can't tell you why but just believe me, they are the best and most caring people around. I will never know how to repay them for all they do for our family. They truly love Zach and his brother.