I have had Alex's results for about a week and have avoided updating because I hate to update when I don't have any good news. I really try to stay upbeat in life and follow suit on this blog. I hate to blog when I have nothing, but bad news. Unfortunately, I decided I couldn't wait any longer.
Dr. O called last week and while the results weren't surprising they weren't encouraging. Alex's stomach did not contract at all except with one of the two medications. However, that medication is a medication that is known to be troublesome to some mito patients and has been tried twice in the past with Alex with bad side effects both times. However, if we have any hope of Alex's stomach working at all to try and eliminate the stomach secretions and gas that build up we may have to give it another try. Dr. K and Dr. O are in conversations to try and weigh the risks vs benefits and come to a decision. As for his small intestine, that didn't look so hot either. The contractions he had were completely erratic and not in the organized pattern they should be. He was officially diagnosed with Chronic Intestinal Pseudo-Obstruction. Basically his intestines act like there is an obstruction when there isn't. His is neuropathic in nature or caused by nerve issues and there isn't really anything you can do to "fix it". We are adding in a med Alex was on as a baby, but we didn't see huge benefits back then and aren't expecting huge changes now. Which leaves us between a rock and a hard place. Alex's continual GI issues are causing worsening Respiratory issues and at some point breathing takes precedence. The last resort is a surgery that I would have a hard time consenting to at this point. We continue to pray that Alex's little body keeps fighting and beats the odds. He has come so far in his little life and we know he will continue to amaze us all!
On a fun note...yesterday we had the pleasure of volunteering at Wish Upon a Par. We always love out volunteer opportunity with Make a Wish and the family we have found through this incredible organization. They have given us so much more then a one week trip. They continue to bless us with the opportunities and friendships we cherish! Alex got to play with his good buddy Kendall and I got have some "girl time" with Ginger (Kendall's Mom). It was an awesome day all around!
Thanks for checking in with us!