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.
Tuesday, February 5, 2013
It's been another busy three weeks.
Matthew had his four bottom baby teeth removed a few weeks ago. He was very brave and they were out within minutes. He is now sporting a brand new , big boy, toothless smile.
We never heard back from his GI doctor about adding a supplement to his formula, so we decided on our own to try adding a small amount of Polycose to his formula once again. Matthew is so thin and still so hungry, that we felt we had to try something. His current rate of formula is at 53ml/hr total 1120 per day. We have been adding the Polycose slowly . He gets 6 tlbs over a 24 hr period. This equals approximately an extra 140 calories. We are increasing it at a slow rate and checking his sugars often since we have been getting numbers as low as 60 and as high as 210 just with the small amount of extra sugar. If his numbers become consistently above 200, a small amount of insulin will be trialed. The trial would be done either in Vermont or Boston. If insulin is used, we would be able to increase the Polycose even more. This would add extra calories and hopefully would satisfy his hunger.
His new AFO's are working well. He says that they feel good and he loves that they have Batman on them.
We will be traveling back to Boston next week for followup appointments with metabolic, GI and Complex Care.
We were able to enjoy a few events the past few weeks. Matthew attended out local SUNY Hockey team Make-A-Wish dinner. It was a Hollywood themed event. Matthew and his good friend Ava wore matching Hollywood shirts and both had a blast.
We also attended the MDA Muscle walk in Albany this past Sunday. They raised over 67,000 dollars at the event :)
Also on Sunday, we saw the Globetrotters. After the show, we were escorted onto the court where Matthew met the team and got autographs and pictures with each of them.