Matthew is the youngest of our three boys. He has been diagnosed with Mitochondrial Disorder Complex I and III, Chronic Intestinal Pseudo Obstruction, FTT and Glucose Intolerance. He has been through countless tests and procedures in the past 8 years . We do not know what the future holds for him, but we are going to do our best to cherish every day with him. Stay strong little man.

Sunday, May 12, 2013

We are back from Boston. The big team meeting was cancelled late  Friday afternoon due to our GI doctor not being able to attend. He claimed that he didn't know about the meeting even though the entire team had confirmed this meeting weeks ago. We had a few other appointments to go to in Boston the same day , so we went just the same.
Matthew saw ortho for the bumps on the back of his heels. They sent Matthew for x-rays of his feet. They said that his bones looked good  but that he has bursitis on both heels. They said that his  AFO braces did not cause the bursitis , but that they needed some padding to protect his heels until they heal. The most common cause of bursitis is overuse of the area affected.  In Matthew's case he is probably harming his feet with his current activities, even though he is less active than typical children are. They are hoping that the bursitis goes away  in a few weeks with rest and not over doing things.
We had an informal appointment with his kidney doctor. He has been great with us and we really like him. He is going to talk things over with his nutritionist and see if we should increase Matthew's diuretic  or try and increase the formula volume slowly again. He also recommended that we make a follow-up appointment with Matthew's urologist to discuss the absence of "feeling the urge" to urinate. Matthew usually only urinates twice a day and only when we make him go. If we don't remind him to go, he just wont. Last week , he went over 24 hours without urinating and didn't even realize he had to go. His bladder is very large, and he produces such a small amount of urine (no more than  200 cc/24 hrs).  
Also, after meeting with two members of the PACT team, we decided that we will be getting a new GI doctor. Our current GI doctor is almost impossible to reach and hardly ever gets back to us or answers our emails. This is a big problem since most of Matthew's issues are GI related. They agreed that we needed someone who would be able to be involved more in Matthew's care and treatment plans. We will keep our old GI doctor only for motility issues.
After our appointments , we stopped by the Boston Marathon Memorial site where Matthew placed a small lollipop bouquet on one of the trees. He also left a small message of hope on one of the signs. We also were able to have a quick visit with our friend Sarah who is currently inpatient. :) We are bummed that we were not able to fit in a visit to see our other friend Chelsea who is also inpatient. Time got away from us, and it was too late to see her. We needed to get home. :( Chelsea, we promise to see you next time :)
New Pictures on : 

Deputy Mighty Matthew's slide show;