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, June 14, 2009

A good weekend.

Matthew 's fever is gone. He ending up coming down with a cold this weekend. It seems to be just in his nose and eyes. He has a green runny nose but he hasn't been coughing. We had wonderful weather the past two days.

Matthew had yet another Birthday party yesterday. It was a for his friend Ava. She turned six and had an American Doll/ baby doll party. Everyone brought their favorite doll to the party. Matthew brought "Little Matthew"(his cabbage patch doll that has a Matching mic-key button and PICC line). He had a good time but didn't want to be outside when the girls were on the slip-n-slide. he went up to Ava's room with another one of his friends and dressed up in "girl" dress-up clothes. He came back downstairs wearing a very pretty dress, hat and wearing handcuffs!

All of the girls thought he was so cute and he decided to keep the dress on while he ate. To top it all off, Ava's mom (who is Matthew's preschool teacher) gave Matthew a big bag of very "GIRLY" dress-up clothes that he could keep. He has had so much fun trying them all on the past two days.

Of course he isn't allowed to wear them outside of the house. We told him that they are only for play and that he has to wear his "boy " clothes when we go anywhere. I'm sure that there are many parents out there that would think it's wrong to let a boy play with "girl " toys, but he's just a kid having fun. I'll post some pictures of him all dressed up on his blog site.Today, Matthew played inside for most of the day but had a big burst of energy this evening. One of his little friends from down the road stopped over and the two of them went in our bouncy house. Matthew also ran the farthest we have ever seen him go on our walk tonight. He wanted to race his friend while she rode her bicycle. He did get tired after a few minutes and finished the walk in his stroller. We were very proud of him. We did check his heart rate when he got into the stroller since he was out of breath. We noticed that his heart rate was actually slower than usual. After all of that running it was only 96 . We took it again a few minutes later after he had been sitting in his stroller and it was back up to his normal 120 range. Terry did talk to Dr. Watkins(GI in Boston) and he did confirm that Matthew's PICC line should be removed. They havn't been able to figure out how to give Matthew the PN without the side effects or why it's happening. Matthew will be started on Pancreatic enzymes and he is to stay on his motility medicine. We still will be having the team phone conference, but not for another week. Matthew's metabolic doctor is out of town until the 19th. We will be discussing what to do next and also getting the Botox injections scheduled. We should also hear back from Matthew's Peditrician about where he needs to go to get the line removed. We might have to go to Vermont.

1 comment:

mancusodiana said...

I came across your blog through the CaringBridge website, which I was directed to from a forum on, believe it or not. I have to say your son is incredibly adorable! I can imagine things are quite difficult for you, Matthew and the rest of the family but from glancing through some of your blog, Matthew appears to be quite the trooper. My daughter also graduates from Preschool next week and having a child Matthew's age, I truly wish you all the best in your endeavors and hope that Matthew gets well soon.