Matthew is turning 7 in just a few days. :) He is having a small party at Micheals Store on Saturday. He invited a few of his friends. They will each be making a wish bottle and a superhero mask. Since Matthew can no longer eat, there will not be a "real " cake at his party. I made him a "smell" cake. It is a decorated foam based cake that smells like cotton candy. I am not very good with cake decorating but it came out ok and Matthew loves it . We are also having a small family party on Sunday evening. Matthew will also be attending the MDA Bowl-a thon on Sunday afternoon. He will be rolling the first ball to begin the event. :) (Matthew and Bradley passed out candy to a few hundred children at our local Trick or Treat event)
Medically, Matthew is doing ok. He hasn't gained more than a few ounces from the tube feeds , but he is still tolerating the formula at 50 ml/hr 24 hours a day. We are mixing his formula with half pedialyte and then adding extra pedialyte to the mixed formula. He's no longer food obsessed but has become even more obsessed about drinking. We only allow him small sips of water or juice every few hours and his g tube is always open and draining. He can not have much at a time because his belly becomes distended and presses on his j tube which causes a blockage and then it leaks. . Its so hard to tell your child that he can not have a drink of water when he's crying and begging for one saying that he is so thirsty. He gets upset and starts saying that he hates Mito and that he wishes he could be normal and eat and drink like his friends do. :( I try to explain to him that everyone is different and that everyone is special no matter what they can and can not do. As he is getting older, it's getting harder to make him feel ok about who he is and the things he has to go through.
(He wanted to dress as a fairy to pass out candy on Halloween)
We have had some success with the K suppliments. He has been stable at around a 3.5 K level. This is in the low normal range. We continue to give him K suppliments through his J tube twice a day and now only go for weekly blood draws. :) Matthew also no longer uses emla cream to numb his arms for his lab draws. He decided that since he was almost 7 he didn't need it anymore. He is such a brave boy :) (All tired out from passing out candy on Halloween)