| Later updates | Aaron update 131 |
| Subject: Aaron update 131 Date: Wednesday, November 19, 2003 7:19 PM From: Kevin Quick To: Aaron Update List Whew, it's been a long day. Let's see if I can squeeze out an update, though. All of our visits went as planned, and all in all, it's been a very good day. We feel encouraged. This morning, we went to the California campus of CPMC (California Pacific Medical Center), where Aaron was born, and met with four specialists at the Whitney Clinic. As it turns out, we already knew three of the specialists from our adventures at CPMC last winter. The first specialist, Dr. Merton (sp?), was the one that we hadn't known previously. He is a pediatric neurologist. He tested Aaron for neurological development. He had Aaron do various mental exercises, such as having him switch his attention back and forth between a flashy, interesting toy and a dull, boring toy. The doctor was impressed with Aaron's abilities, and said that mentally, he appears to be perfectly fine. He saw no evidence of any cerebral palsy. He said that if Aaron had been slow mentally and slow to grow physically, he would have cause for concern. However, since Aaron's mental development seems to be right on track, he did not think we had too much cause for concern overall, in spite of Aaron's slow physical growth. He said that what we'd really like to know, of course, is how well-developed Aaron will be mentally and physically when he's 20 years old. However, he said that the amount of data available for 20-year-old 24-weekers is very slim, because there so few of those people available to collect data from! The pediatric neurologist left us believing what we've been believing all along: that Aaron's little brain is just fine. Oh yes, the doctor also said that Aaron's IQ will not be affected by his small size or slow physical growth. This was encouraging to us, too. Secondly, we met with Jan Tarkeson (sp?), an infant development specialist. Kathleen had known her from some presentations that she had made to the preemie moms at CPMC last winter. She spent a fair amount of time with us, handing Aaron various toys and observing what he did with them. She was very enthusiastic about Aaron's ability to receive the toys, analyze them, transfer them from one hand to the other, bang two toys together in imitation of her, etc. She said that he had exceptional manual dexterity and coordination in his hands (now all we need is the musical gift, right?). She observed Aaron sitting and scooting around on the floor, too. She observed that his back muscles are stronger than his stomach muscles, which is a common "preemie" trait; preemies spend most of their time on their backs in their incubators, and don't do stomach crunches the way fetal-positioned babies do while in the womb. All in all, Jan just glowed about how capable Aaron was, ability-wise, for his age. So, we're feeling good about that. Thirdly, we met with Dr. David Lee, who was Aaron's primary neonatologist in the NICU last winter. It was really good reconnecting with him. After observing Aaron for awhile and checking him over physically, he said that he thought Aaron was doing just fine. He wasn't overly concerned about Aaron's slow weight gain, and suggested that Aaron will probably eventually have catch-up growth, which may not be complete until he's 8 years old or so. And, he confirmed something that I had read recently, that really early preemies' catch-up growth often doesn't kick in until 3 years of age. So, he suggested that we do the best we can to feed Aaron his 120 calories per kilogram of body weight, and beyond that, not to worry too much. So, he set our minds and heart at ease a little bit there. Fourthly, we met with Karen Shearer, who was our social worker last winter. She's going to send us some information on a high-risk medical insurance program, specifically designed for high-risk children, that she knew about. However, because of the state budget cutbacks, she wasn't too optimistic on the availability of state funds for this program. (By the way, the pediatric neurologist did say that Aaron will still be considered "high risk" for neurological problems for some time, even though he seems fine now, because of his extreme prematurity. There are subtleties of speech development, for instance, whose delays won't be observable until Aaron's speech has been pretty well developed. So, he recommended ongoing neurological assessments as Aaron develops through his first several years.) All in all, our visit to the Whitney Clinic really boosted our spirits. All of the specialists gave us the impression that developmentally, Aaron is doing just fine. After our visit to the Whitney Clinic, we took the shuttle bus to the Pacific campus of CPMC, about two miles away. There, we went to the nuclear medicine department, and Aaron had his liquid gastric emptying test. A technician added a radioactive isotope to three ounces of Aaron's formula, and (hungry, fasting) Aaron had his breakfast. Then, over a period of an hour and a half, a scintillator machine "took pictures" of the radioactive liquid every 15 minutes as it emptied out of Aaron's stomach. On the attached photograph, you can see one of these pictures on the right-hand computer monitor. The upper blob is the radioactive food in Aaron's stomach, and the lower blob is the food emptying into his digestive tract. The technician said that she wouldn't know precisely if Aaron's stomach emptying speed is on track until she is able to graph the data that the computer collected during the test, but she did say that at first glance, things look good. The food didn't just stay backed up in the stomach, for instance, which is good. Because Kathleen is pregnant, she was not allowed to be near Aaron during the test, nor for 3 hours afterward (the isotope has a half life of 3 hours). So, for the afternoon, it was up to Dad to take care of his radioactive kid. It's been a good day. We haven't discovered any problems so far, although in a way, it would be nice to find something that we could "fix," that would help Aaron eat more and grow more quickly. However, the events of the day made us feel better about things as they are. We'll have more doctor visits and tests tomorrow, and we'll let you know how those go, too. We'll be traveling home tomorrow afternoon. Thanks, everyone, for your continuing prayers and support. Love, Kevin, Kathleen, Aaron & baby #2 |
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