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Hi my name is Colin, I was born at 36 weeks on April 12, 2006 at South Shore Hospital in Weymouth, MA. I could not go home right away because I was yellow from being jaundice and I also had a low body temperature.

For the first month of my life I projectile vomited all over my mommy and daddy (I owe them a new couch). We then found out I had Pyloric Stenosis. On June 6, 2006 I had my first two surgeries for Pyloric Stenosis and hernia repaired at Children’s Hospital Boston. On July 3rd, I slept the whole day, even through the fire works. The next night my wrist started to jerk. Mommy and daddy took me to the hospital and found out I was having seizures. After many tests and three very long weeks I was finally diagnosed with Menkes Syndrome.

On July 7th I was started on Copper Chloride injections in hopes that it would help me grown and stay healthy. Mommy and I went to visit Dr. Kaler in the National Institute of Health (NIH). During the next few months I was seizure free and happy. We also tried natural medications in hopes of finding a cure. In December I came down with a cold. After a month of going to a pediatrician I was admitted to Children’s for increase of seizure activity and Broncholitis.

In February we went to the NIH for a second time and I got a skin biopsy done. Mommy stopped giving me the copper injections after Dr. Kaler said there was no guarantee that they would help (ouch they hurt!).

In March I was admitted to a children’s hospital for increased seizure activity and Broncholitis for second time. An NG feeding tube was placed to help me eat because liquids were going into my lungs. Around my first birthday in April, I was in a lot of pain when I urinated. My mommy took me to the ER a few times before any of the doctors would listen to her and give me an ultrasound.

My mommy was right I had Bladder Diveruticulitis. On May 29, 2007 I got a more permanent feeding tube and my bladder was fixed. In November of 2007 I had a procedure called a Fundoplication to tighten the area where my esophagus and stomach connect so I won't have reflux as bad.

My mommy makes sure I am catherized every 4hrs so I don't get UTI's due to my bladder diverticula. I sleep with O2 at night to help me breath easier and I have to be suctioned often. I also have problems with my right shoulder popping in and out.

The good news is that I get to go to school four days a week and I love it. I love the bus ride too.



Mommy Danielle


Posted: August, 2007

 
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