| Later updates | Aaron update 133 |
| Subject: Aaron update 133 Date: Monday, November 24, 2003 11:02 AM From: Kevin Quick To: Aaron Update List Actually, this is my second attempt at writing update 133. I wrote the first one last night, and decided that it was so negative that I didn't want to send it. We had a rough weekend. Aaron's still not eating too well. We tried one new food: rice cereal with applesauce, but he threw up immediately upon tasting it. He did the same thing a couple of weeks ago when I gave him a miniscule taste of banana. Getting Aaron to try new foods may be quite a challenge; he seems to be VERY sensitive to change. We'll have to introduce the new foods very slowly. We're still undecided on the Reglan, and it's just tearing us up. We want to do the right thing, but how do you do the right thing, when you don't know what the right thing is? Our current thought is that we'll hold off on the Reglan for a week, see how things go, and let our heads clear a little bit. A few good nights of sleep would help, too; we haven't been sleeping very well. The first couple of days in San Francisco were great; very uplifting. Then, we hit our usual wall of worries and concerns on Thursday, when we met with our pulmonologist. Now, we're back to the big-time worries. Maybe we need a different doctor? We're planning on talking to our pulmonologist to see if we can get an idea of just HOW slow Aaron's stomach emptying is. And, we're thinking about calling Dr. Lee for a second opinion on the Reglan. I finished writing the computer program to keep track of Aaron's calorie intake, and we entered in the data for the past 4 months. To maintain his weight, Aaron needs to consume 100 calories per kg of body weight. To grow, he needs to consume 120 calories per kg of body weight. The past four month daily averages have been 97, 87, 94 and 97 calories per kg. Emotionally, Kathleen and I feel as though we're near the ends of our ropes. I think Kathleen would appreciate some encouraging phone calls; we've been feeling a bit isolated and alone lately, along with the worries about Aaron's eating. She'll be out until mid-afternoon today, so if you do call, you may want to call after then. Thanks! Love, Kevin & Kathleen |
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