I AM EXHAUSTED!!! We were in Dr's appointments for 6 hours straight today. But befoer I get into that I have big news...
Alex pooped on the potty 3 times today. For those of you who don't know our history let me explain how huge this is. Alex has been potty trained (peeing) for almost 2 years. Because of his history of severe constipation he is petrified to poop. For the last few years he has been asking me to put a diaper on. he poops and we take it off. Starting in April he was even scared to poop in a diaper and has been trying to hold his poop. So today while we were out I ran out of diapers and he pooped on the potty. I cannot even begin to tell you how very proud I am of him. This is such a milestone and will make my life infinetly easier!
Now for our appts... First we saw our "regular" GI. He is thrilled with how Alex is doing and doesn't want to change anything. He gave us a prescription for Alex's B12 supplementation. Other then that nothing new.
Then we went to a differnet hospital to see a GI doctor that specializes in motility issues. He could tell from our history that Alex is doing better then he has in quite some time. We discussed doing further testing at some point in the future, but both agreed that now was not the time. He wants to run some labs to look at some dysautonomias. Your autonomic nervous system is responsible for regulating all the body functions we don't think about: heartrate, blood pressure, sweating, pupil dilation, etc. We know Alex's autonomic nervous system does not work correctly. Actually, Dr. Koenig's first thought was an autonomic disorder. When Alex's muscle biopsy came back positive for mito we stopped testing for dysautonomias. Dr. C feels like it is very possible that Alex has a dysautonmia separate from his mito. The last thing is he feels like Alex needs to repeat some testing on his pancreas at some point.
That was a quick synopsis. Good appts. Everyone gave the seal of approval to keep on keepin on for now.
Tomorrow is the day we have been waiting for at the water park!!!