Matthew can no longer eat the Gerber puffs we have been giving him. The small amount of puffs, along with some candy sticks were causing too much trouble for his belly. He was losing far too much fluid and his belly was becoming distended. He is back on just 24 hr. formula feeds with gum, lollipops. We do let him have bites of sugar as well. He continues to feel both hungry and thirsty at his current 54/hr rate. He was not as hunger obsessed at the lower rate, but we are trying hard to push forward with increasing his feeds since he needs the extra nutrients. He still has not gained any weight. He is the same as he was before the tube feeding began. Again, this is very frustrating since he really hasn't shown any improvement on the j feeds.
He will be going back to Boston in a few weeks for inpatient motility testing.
Last weekend, Matthew's favorite band, The Glengarry Bhoys were in town. He was super excited. He dressed in his kilt and was all ready to rock it out with the band. Unfortunately, the band had some technical difficulties and started later than scheduled.
Matthew ended up getting very tired and was falling asleep on the pool table. Terry had to take him home and put him to bed.
On a good note, since we are friends with the band, he was able to talk with them a bit before the show, and he even got a new patch for his backpack from Graham(the lead singer). He thought that was pretty cool.
Matthew did have a wonderful weekend. We traveled to Albany on Friday evening to see Shrek The Musical compliments of the Starlight Foundation. It was a wonderful show and Matthew laughed and enjoyed the whole show. He did fall asleep a few times but was startled awake by Shrek's loud voice. :)
Last night we attended the annual Make-A-Wish Cardinal Hockey Dinner. Matthew does not know a lot about hockey but he had a blast.
He brought his good friend Ava with him and again, he made it through the entire event. He had his moments where he just had to lay down and rest on the floor, his chair and on us, but he would perk back up and he even showed some of his dance moves. :)
Today, he woke up very puffy and exhausted. He has spent the entire day on the couch. This is one of the many downfalls of having Mito. Hopefully by tomorrow he will have rested enough to be able to go to school.
He will be going back to Boston in a few weeks for inpatient motility testing.
Last weekend, Matthew's favorite band, The Glengarry Bhoys were in town. He was super excited. He dressed in his kilt and was all ready to rock it out with the band. Unfortunately, the band had some technical difficulties and started later than scheduled.
Matthew ended up getting very tired and was falling asleep on the pool table. Terry had to take him home and put him to bed. On a good note, since we are friends with the band, he was able to talk with them a bit before the show, and he even got a new patch for his backpack from Graham(the lead singer). He thought that was pretty cool.Matthew did have a wonderful weekend. We traveled to Albany on Friday evening to see Shrek The Musical compliments of the Starlight Foundation. It was a wonderful show and Matthew laughed and enjoyed the whole show. He did fall asleep a few times but was startled awake by Shrek's loud voice. :)
Last night we attended the annual Make-A-Wish Cardinal Hockey Dinner. Matthew does not know a lot about hockey but he had a blast.
He brought his good friend Ava with him and again, he made it through the entire event. He had his moments where he just had to lay down and rest on the floor, his chair and on us, but he would perk back up and he even showed some of his dance moves. :)Today, he woke up very puffy and exhausted. He has spent the entire day on the couch. This is one of the many downfalls of having Mito. Hopefully by tomorrow he will have rested enough to be able to go to school.
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