...continued from the Home Page...
They set up another ultrasound, which showed indeed that Colton was in the first percentile—actually he was about 1 pound. The next week, we went to Vanderbilt University Medical Center to see a high risk OB/GYN. She instantly ordered an amniocentesis. The doctors were worried about the possibility of Colton having Trisomy 18, which has a fatal diagnosis. The night that we had to wait to see what the results were was the WORST night of my life. At last the next day, the results were negative for Trisomy 18, but they still did not know what the problem was with Colton. I continued to go to the doctor twice a week, which was 1 ½ hours from home. On one day I would have a stress test and the other day I would have an ultrasound. Each doctor’s visit they would tell me something else that could be wrong with Colton. In the beginning, we were hoping that I would make it to 32 weeks and then hoped for 36 weeks. At 36 weeks, I was induced. The doctors and staff were very worried. They did not know what to expect when he was born. As it turned out, Colton did not have any major problems. (The Lord does answer prayers.) Because of this low birth weight, he had to stay in the hospital for 2 weeks and a genetic doctor saw us while we were there. He thought there was something unusual; however, he could not pinpoint exactly what it was. He ran several tests, which came back negative. At this point, the geneticist put together all of Colton’s special traits (hypospadius, low set ears, large head for body size, inward curving of the fifth finger and syndactyly (webbing) of the 2nd and 3rd toes. All of these traits combined led to the RSS diagnosis. Colton was about 4 or 5 months. After reading the information on RSS, it was obvious that Colton was a “poster boy.” However, I wanted to get a second opinion from the University of Louisville. When the doctor saw Colton, he instantly said, “He has Russell Silver Syndrome.” From there, I really did not know what to do, I just knew that early intervention was VERY important. I also knew that learning as much as possible about RSS was a necessity.
Colton was very demanding as an infant. We had to take him to the pediatrician twice a week for about 4 months to be weighed. I pumped breast milk for about 4 months. In addition, we had to add polycose and oil to his bottles. He never drank more than a 4-ounce bottle and he NEVER drank the entire bottle at one sitting. He preferred to “snack” all throughout the day. He did not sleep through the night. Colton began physical therapy and developmental intervention at about 6 months of age. He was delayed in most of the major milestones. He never did crawl. Actually, he was not very happy until he learned to walk at 17 months old. He has made great progress and is continuing to “close the gap.”
I had been given some brochures about MAGIC when Colton was diagnosed. I read them and really did not know what to do with the information. We continued to see our endocrinologist regularly and in June he decided to start growth hormone therapy. However, he said, “We do not know if this will work.” We were to begin the injections on Wednesday and I thought –I need to speak to someone who has done this before I start so, I got out my information about RSS and found the phone number for MAGIC. Within one hour, I had learned about the upcoming convention and Jennifer was working on a scholarship for my family. We were able to go and it was the BEST thing I have ever done for Colton. We learned SO much about RSS, what to expect, and what to do to help Colton be the best he can be. We started Periactin when Colton was 17 months old. At this time, we cut out juice and Colton was given only milk. We started to focus on feeding him starches. After 3 months, he had grown 2 pounds and 2 inches. Our next step was growth hormone therapy. We began injections on Sept. 24. Colton has adapted very well and we (his parents) are surviving much better than I ever imagined. Throughout the entire process, our doctors have been very supportive and eager to learn and help Colton to the best of their ability. Colton, age 20 months, is currently 14 pounds and 29 inches.
After reading several stories in the past newsletters, I wondered “is this my story?” As you can see we are all intertwined together because of the precious blessing that God gave us. Whoever said ‘ great things come in small packages’ was very much correct.
MAGIC is a great foundation and has helped my family more than could ever be imagined. I will always remember Jennifer and Stacey (she gave us the scholarship to the convention); they truly are angels on Earth.
Greg & Libby George