Vivian J. Ho, our only child, was born on March 27, 1990 by C-section due to a breech position. She was overdue by one week and her weight at birth was 6 lb. 9 oz. At birth she was deemed a healthy baby.
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Vivian as a Baby
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After a few weeks, however, we were concerned that she exhibited signs of diarrhea all the time. Her weight gain was poor and she was floppy. Didn’t know better, we thought all babies are like that. Difficulty in feeding aggravated when she had her second immunization at four months, at which time she slept extensively and objected to feeding afterwards. She also developed a squint.
Trying to feed her required constant effort. When she was 9 months old, her weight dropped below the 5th percentile. Her paediatrician was finally alarmed and suggested investigation. In January 1991, Vivian was admitted to the children’s hospital for tests. At this time she stopped eating. No diagnosis was made and she was discharged with a nasal feeding tube.
Thanks to a periodic tube-feeding schedule, she gradually gained weight. She was still floppy and unable to roll over, let alone sitting. That summer, we went to Mayo Clinic for investigation, but once again a diagnosis was not available.
The first seizure occurred when Vivian was 17 months old, probably due to fever after a DPT shot. There after she had numerous incidents of febrile seizure and special attention had to be paid to her body temperature. On the other hand, feeding improved under constant insistence in training her to feed by mouth. We gave her pureed foods at meal time, supplemented by liquid tube feeding at other intervals. She also benefitted from physiotherapy and was able to sit.
In the summer of 1993 a doctor at the children’s hospital called us and requested an office visit. She told us a diagnosis was discovered for Vivian and that was CDGS. We didn’t know much about the syndrome yet, but that was a starting point. We were able to search medical literature, came to know Dr. Krasnewich and other CDGS parents, and finally we discovered the CDGS forum on the Internet.
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Vivian at 4 Years Old
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Vivian has had some remarkable progress. She began taking her food by mouth again and was able to wean off the nasal feeding tube after wearing it for 18 months. She still takes foods pureed with a blender, but is able to enjoy a greater variety as well as some ordinary snacks. Physically, she is less floppy, can sit up on her own and regain balance when she loses position. She can stand while holding to a bar, or walk in marching style with adult assistance. At home she goes about by commando crawling. She has a wheel chair and a tricycle at school for mobility and fun. We use a standing frame to help her develop strength and the sense of balance. However, she doesn’t have any walking device. All she has for walking are us - parents holding her by the hand or supporting her under the arms - but she enjoys it very much.
Today, almost seven years old, Vivian can communicate through some simple signs and gestures. She is able to understand what is spoken to her. She can distinguish colors and common objects. Most important of all, when we take her out for a ride, in the mall, or on a trip, she is aware of the surroundings and is interested in new kinds of stimulation. We think the potential for growth is there. Let us hope that new findings in medical science may be able to help her go further on her developmental path.
eff: 1996