Saturday, November 19, 2005 9:17 PM CST

Aidan has had his 6th transplant anniversary (Oct 1, 2005). He has been completely healthy for over a year now. His blood work has been absolutely stable and the best news, he has not used his G Tube for almost a year now! His favorite foods are: ramen noodles, quesadillas, stirfry chicken with rice, ham sandwiches, and then almost any kind of junk food. He likes fruit too, especially grapes. Will not even touch bananas or eggs, but other than that his diet is not too bad. He still drinks his Pediasure formula occasionally. We have enough around the house for the whole family to survive on for a month.

We have not asked about removing his Gtube yet, because there is not too much of a point. It is not bothering him or anyone right now. We almost forget it is there.

Thursday, January 13, 2005 12:51 AM CST

We have had snow here in a big way! About ten feet has been dumped in our corner of the Sierra National Forest, resulting in several power outages... the longest was over 48 hours. From Aidan's perspective, this was a fun adventure... his family was huddling around the fireplace for warmth as the outer rooms of the house dropped in temperature to as low as 40 degrees. He got lots of attention and cuddles from everyone and all the toys were easily within reach. When it got too dark to play, he could snuggle under a blanket with his father Kevin who of course couldn't work in his office because there was no computer. We've talked about buying a generator, but the experience WAS sort of fun and relationship building. We had running water (cold) and our gas stove worked, which definitely made life a little easier than it was for the pioneers.

Aidan's medical news is all good. He remains shunt-free after one year. His last test for the Ebstein Barr Virus was negative. He still has to stay on an antiviral medication for a year, but it doesn't seem to have any major side effects. He has not had a seizure for over a year. He is progressing developmentally. He talks a LOT and is a role model for his little brother Patrick, AND a rival as well. Aidan is never mean to Paddy, but Paddy has been known to shout "No nay NEVER!" to Aidan when they want the same toy, and Aidan responds nervously by saying, "Paddy, go see the guys!" (a polite way of saying "Go away!"). On the other hand, they also enjoy racing down the hall together, shouting "Ready set GO!" and they feed each other treats like chocolate chips. All in all, Paddy has been good for Aidan in many ways.

AIdan is eating WAY more of his calories by mouth instead of through his G Tube. This is big progress. Every time he started eating more by mouth in the past, some medical event occured to put him back to square one. But today, for instance, he just ate three bowls of Fruit Loops, and the other day he ate two bags of chips. OK, I didn't say they were GOOD calories, but just the eating part is a big start and what the occupational therapists say is of first importance for him. We can work on nutrition later. He is also drinking several cans of his formula a day on his own, and even takes his medicine and vitamins by mouth.

Well, I guess that is all the news for now. Aidan wants me to read to him. There are some more recent pictures in the photo page.