(posted February 21, 2021)
Hi everyone! I am Jordan James (JJ) and I am 4 years old (soon to be 5)! I decided to make my appearance 6 and a half weeks early and spent my first 6 weeks in the Neonatal Intensive Care Unit. It was during my time in the hospital that my mama was first told I had 22q11.2 deletion syndrome. She had never heard of it before and it took our family by surprise.
So far, we have visited many different doctors and traveled as far as Children’s Hospital of Philadelphia, from our home in Alabama, to meet with specialists who understood what 22q was. I have had my fair share of hospital stays since my initial stay. I ended up getting aspiration pneumonia right before my first birthday, and since then I now get fed directly through the button in my stomach. I had to have surgery to fix a cleft in my throat when I was 2 and got super sick. I was in the Pediatric Intensive Care Unit for 10 days. I was so glad I got to go home with my mama after that. I am cleared to eat now, but it really does not sound like much fun to me. So, we have started feeding therapy to help me learn how to eat without using my button.
I enjoy going to school and have missed my pre-k classroom this year. It was decided that it was safer for me to learn from home because I get sick so easily. I still get to go to the big school to meet with my OT, PT and Speech teachers though. I am learning to use a tablet to talk to my family. I do not mind wearing my glasses, but those hearing aids of mine I do not like to keep in. Next fall I am going to start Kindergarten at the same school my big brother and big sister attend. It will be the only year we are all at the same school!
Last summer I was diagnosed with autism level 2 and global developmental delay. My mama says that my diagnosis’ do not define who I am! I recently started to learn to swim and when the virus starts to clear up, I am hoping to take part in the Special Olympics program in my hometown. I love all things Mickey Mouse or water related and love to play on my tablet. Keeping swimming my fellow 22qties!