“I am growing stronger every day…”
Addison Grundy, Trisomy 13, 1/17/2013, Copperas Cove, TX
Hello, my name is Addison. I was born at Ft. Polk, LA on January 17, 2013 weighing 5 lbs. 6 oz. and 17.5 inches long. The doctors were a little concerned when I was born because I had a simian crease hands. The doctors said that many babies are born with that. The next day my mommy was holding me and I stopped breathing and my face started to turn blue. My nurse took me from my mommy and gave me some oxygen and my color came back.
The doctors then transferred me to the NICU in Alexandria, LA where I stayed for three weeks. The doctors did a whole bunch of tests and found out that I had Trisomy 13, Laryngomalacia, and acid reflux. The doctors told my mommy and daddy that babies with Trisomy 13 usually do not live but for maybe a month or so. They were sad all over again, but the doctors said that I am a unique case because I do not have any of the major signs of Trisomy 13.
Therefore, my mommy and daddy demanded that another test to see if the first test was correct and we got the same results. My mommy and daddy had a hard time while I was there but when the doctors let me go home they were very happy.
When I got home, I had an apnea monitor. My daddy got a transfer to Ft. Hood, TX when I was three months old. When arrived there, I started to have seizure like episodes and my mommy and daddy took me to the emergency room. The doctors there sent me to a good children’s hospital and I found out that I have Sandefurs Syndrome.
I now have many different specialists looking after me. Since we have been here, I do not use my apnea monitor anymore. I hated that strap around my chest because it was very uncomfortable when I would go to sleep. When I was five months old, I found out that I had glaucoma and I had two surgeries, one on each eye. My Ophthalmologist is very pleased with my progression and believes that I should be able to see, but I might have to wear glasses when I get older.
My Mawmaw bought me a globe that has a bunch of pretty lights that I just love looking at. On 20 September 2013, three days after my 8-month birthday, I found out that I have Myoclonic Seizures. These seizures are very quick, kind of like when someone scares you and you jump. I have about 10 of these a day.
At my last appointment, I weighed 14 lbs. 13 oz. and I am 26 inches long. I am eating baby food and my favorite is Apples and Chicken. I also have a 6 oz. bottle of formula with rice cereal to make it thick because of my reflux.
My geneticist said that when I am 1 year old that I will have a skin test done to see if I have Mosaic Trisomy 13. She said that the tests I had before were blood tests and would not detect Mosaic Trisomy 13 if it were less than 20%. The skin test would be very accurate on the diagnosis. I am growing stronger every day and I am even trying to sit up by myself, but my muscles just are not strong enough yet.
Since my 8 month birthday a lot has went on. I have been diagnosed epilepsy, been hospitalized, and have had 5 seizures, one of them lasted for about 4 minutes. I am taking keppra, colonzapam (I think that is how it is spelled), and diastat when needed. I had to get the diastat when I had my long seizure. I didn’t like getting that because my daddy had to give it to me in my bottom. In February I was admitted in the hospital because I threw up about six times on Super Bowl Sunday. At first the doctors thought I had pancreatitis, but after a bunch of tests and during a month long stay in the hospital we found out that I had ectopic pancreatic tissue in my stomach wall. This is what was causing me to be sick. I had another surgery to get that out. During this whole time I had a PIC line in my arm because I could not eat anything by mouth. While the PIC line was in a got a staph infection in my blood. When that was all taken care of I got to go home but still had to take antibiotics. The antibiotics made me go potty real bad and I got another staph infection on my bottom. When I finally got that taken care of I found out that I had my third UTI since December. Mommy and daddy got me medicine for that and now it is gone. Soon I will be having a procedure done in my bladder because we found out that I have urinary reflux. The doctor said that we caught it in the early stages so it did not get real bad. Other than having my 1 year birthday, my first Christmas, and going to physical/occupational/speech therapy twice a week that is all I have been doing for the last 8 months. I can’t wait until July when I get to be a BIG SISTER!!!!!!!!!
Note: This story was updated 5/21/2014