Tuesday, August 19th, 2008

Tuesday, August 19th, 2008
Today was a red letter day in the Brown home! Mattie woke up feeling fine, with no fever! His physical energy level is down, but his mental energy is quite good. Peter and I have been taking turns today playing with Mattie, since he is very much on and wants to stay busy. Which as many of you know is quite typical for Mattie!

We have been struggling with Mattie on taking his antibiotics. Rationalization, rewards and even bribes were getting us no where. Mattie needs to take antibiotics three days a week, twice a day, to prevent him from getting pneumonia. I was talking to Julie this morning, a friend of ours from RCC, and another coordinator on Team Mattie. Julie happened to say, "have you tried holding his nose" so Mattie can't smell what he is swallowing. Well we tried everything else, so I figured that seemed to make sense, let's try it! Mattie thought that was such a funny suggestion, that he decided to try it and guess what? Down went the medicine! We made a super big deal out of his achievement, and we plan on having him hold his nose again tonight when he takes his second dosage. Thanks Julie!

Another big achievement for the day was Mattie took a shower. Funny how the usual occurrences become big deals. Any case, Mattie hasn't showered for about two weeks, since he was admitted to the hospital. He was frightened to get "Sparky" wet. But we taped up Sparky today with a plastic bag, and Mattie showered himself. When he got out of the shower, unfortunately "Sparky" got wet. Which meant that his dressing needed to be changed. Now that sounds easy enough, but picture pulling VERY sticky tape off of a very tender part of your body, that has a tube coming out of it. Not a pretty picture. However, Mattie was VERY brave, and sat through the changing. At one point, I thought I would be unable to complete his dressing change effectively, and I basically said, "I can't do this." At which point, Mattie told me, "yes you can, you are doing a good job." Despite the pain, he still has a sense of humor and I figured if he thought I could do it, I better prove him right!

The rest of the day, we have been spending doing a lot of lego building, playing Funny Bunny (a board game), Ants in the Pants, and Don't Break the Ice. The classics are coming back out! Mattie is enjoying reading his e-mails that you are sending him. Thank you for doing this. He even received an electronic greeting card today, which he thought was SO much fun to watch. I want to thank Christine for checking in with us several times today to see if we needed food, and Alison and Ann (our other Team Mattie Coordinators, who are both on vacation with their families) for checking in with us today. Thank you Julie and all of Team Mattie for the work you are doing on our behalf!