Collin's story

Collin is six years old, and still not able to speak much. Before he was born I did not know that there would be anything wrong with him. I had a doctor who thought because I was eighteen my baby would be perfectly normal. Collin was born at 11:30 am on May 24, 2000, weighing only five pounds seven point two ounces. He was breathing really fast and the doctors thought he would stop breathing altogether; he was air-lifted to Children's Hospital in Washington DC.

Even though Collin was well loved by all of his nurses for being a beautiful baby; they thought there might be something medically wrong with him, due to some of his features. The nurses in the NICU decided it would be a good idea to call in the genetics department. I was first told that my son had Aarskog syndrome. This would have meant Collin could be in a wheel chair, and completely helpless. I didn't want this for my child; I was very scared.

One week after Collin was born I took him home, along with a list of doctor's appointments he was scheduled for. The most important was a genetics appointment which I could not wait for; as I thought that I would be learning more about Aarskog syndrome. At that meeting the geneticist stated that Collin did not have Aarskog syndrome but instead he was born with Mosaic Down syndrome. I told the geneticist, "Thank God! Corky, from life goes on, I can deal with that!" The geneticist then went on to tell me that there were some test that Collin would have to go through.

The first test he was to have is an echocardiogram. In children with any kind of Down syndrome there is a high likely hood of a heart defect. I was anxious for the three weeks leading up to the day of the test. When the day finally arrived and they told me my son had a perfect heart I cried, I was so happy. The second test Collin had to undergo was a hearing test. We were told to be at Calvert Memorial hospital in southern Maryland to have the hearing test performed. While the nurse took an hour to find an ear piece that would fit into his ear Collin fell asleep. The nurse had to do the test twice to make sure the results she was getting were correct, as she thought that she was doing something wrong. Without being told what was going on I was asked by the nurse to wait for the doctor who told me that my son had failed the hearing test. I was told to make an appointment with the specialist at Children's Hospital, because I was already connected with them, so that the specialist could perform a more in depth test.

A couple of days later on the way to Children's Hospital, I had to keep Collin awake and not give him any fluids, because he was going to be put under anesthesia. The car ride was very long and noisy, as the trip was four hours long and Collin had a tendency to fall asleep as soon as he was placed in a car. At Children's Hospital Collin was placed under a sedative to make sure he didn't move during the test, as the machinery was very sensitive. The wait was long and boring, but after four hours of testing I was told my son had failed another hearing test. The doctor did go on to say that Collin, with a tuning fork behind his ear, could hear. I was given a list of different Ear, Nose and Throat doctors to call and make an appointment, as Collin's ears would have to be closely watched.

After calling around for a couple of weeks, I finally found a doctor who had an available appointment only a couple of days away. At this time I was told Collin has very small ear canals, which lead to his ears filling with fluid and him losing most of his hearing. Due to his hearing problems I would have to worry about Collin not developing his speech on track with most kids his age, with or with out Down syndrome. To this day Collin has had six sets of tubes placed in his ears to reduce this affect.

Collin started school when he was 3 years old. Back then he was only going to school 2 days a week to start to understand what it would be like to learn away from mommy and be around other children around his age with some kind of disability. We moved to Georgia when Collin was 4 years old and he started to go to pre-Kindergarten all day. This was very difficult for him and his teachers has Collin was still in diapers as he didn't understand how to use the bathroom. We moved to New York and Collin started to get potty trained. This worked very well for him at age 5 he had been around kids in Georgia that could use a bathroom. The only problem that still after a year that pops up is that the school makes Collin ask to go to the bathroom and at home he will wait until he has to go bad to say something and can have accidents. We have gotten into the habit of telling Collin to go to the bathroom every once in a while to make sure he has no accidents. Collin will be going into the first grade this school year. He loves school and all of his teachers fall in love with him.

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