| Later updates | Aaron update 130 |
| Subject: Aaron update 130 Date: Tuesday, November 18, 2003 5:16 PM From: Kevin Quick To: Aaron Update List Seems like old times this week... daily updates from San Francisco! This morning, we had our first visit with Dr. Chuan-Hao Lin, a pediatric gastroenterologist (Dr. Perr, whom we were originally scheduled with, was out sick today). We spent a fair amount of time bringing Dr. Lin up to speed on Aaron's history and eating habits. Dr. Lin suggested two medical tests: a liquid gastric emptying test, to see whether food is going though Aaron's digestive system at the proper speed, and a barium swallowing upper GI test, or acid reflux test. With a fair amount of schedule shuffling, we managed to schedule in these two tests over the next two days, on top of the things we had already had planned. Tomorrow morning, then, after our Whitney Clinic evaluation, we'll do the digestive tract speed test, and Thursday morning, before the pulmonology team meetings, we'll do the acid reflux test. We'll be shuttling back and forth between two hospitals for these tests, evaluations and meetings. Dr. Lin did suggest something that should be helpful. He said that for a baby to maintain weight, it should consume 100 calories per kilogram of baby weight (or, mass, to be technically correct) per day. In order to gain weight, a baby should consume 120 calories or more per kg. He calculated that Aaron is now getting about 100 calories per kg. He suggested that we feed him more solid food, including rice cereal and fruits and vegetables, as this solid food will contain a more dense concentration of calories than does the formula. So, we'll try that. And, I'll put together a computer program for Kathleen that will calculate the calories per day per kg that Aaron is consuming, based on what he eats: X ounces of 27 calorie/oz. formula, Y tablespoons of rice cereal, Z tablespoons of squash baby food, W tablespoons of glucose polymer powder (Dr. Lin gave us a sample can of this high-calorie food additive) etc. I like this approach, as, on a day-by-day basis, we'll be able to monitor how well we're doing on our goal of feeding Aaron 120 calories or more per day per kg of body weight, regardless of what combination of foods he eats. Dr. Lin suggested that we stay away from appetite stimulants for now, as they have undesirable side effects. Generally, he said, appetite stimulants aren't used until a child is 2 or 3 years old. Also, he wants to wait until our follow-up visit, in 2 months, before thinking seriously about going for a G-tube. Aaron has been enjoying all the activity. He enjoys meeting new people, and people seem to enjoy him. ("How old is he? Well..."). He was especially fascinated with the kids playing in the waiting room. Here's a picture that I took today of Kathleen and Aaron in the play area of the waiting room. You might notice Kathleen's growing belly; tomorrow begins week 29 for baby #2! Love, Kevin, Kathleen, Aaron & baby #2 |
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