The Simmers

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Our son Jordan was born early at 33 weeks. Our story with 22q begins with his time in the NICU. During his time in the NICU it was determined that Jordan didn't have any calcium in his system. As you would imagine, this concerned his doctors. After talking with several specialists, they decided to run a FISH microarray test on him at 3 weeks old. His NICU nurse that day told us it was just to rule out what she called DiGeorge Syndrome. When he was 5 weeks old (and still in the NICU) his test results came back positive for 22q11.2 deletion syndrome. At exactly 6 weeks old he came home from the NICU and so began our journey. He has bilateral hearing loss. He wears hearing aids when he's not fighting constant ear infections. He's always had reflux issues since he was born and has a hard time growing. Two months before his first birthday he came down with a case of pneumonia that lasted for five weeks. It was determined he was aspirating everything he drank/ate. He was fitted for a g-tube the week before he turned 1. Having the feeding tube has allowed him to start growing, although he is still just barely on the growth chart for height. Last December we found out he has a laryngeal cleft and enlarged adenoids. The cleft is more than likely what is causing the aspirations and he is scheduled to have it fixed in March. The adenoids are helping to contribute to his ongoing ear infections and his sleep apnea. He can't currently speak and is working on ASL. He is in early invention for Speech, Physical and Occupational Therapy. After his surgery, he will also be attending a feeding clinic. Despite everything he has been through, he is one of the happiest little boys you will ever meet. He loves to laugh and smile. He loves his family and enjoys playing with trains with his big brother or sitting and letting his big sister read to him from a colorful book. His favorite thing right now are Mickey Mouse and anything that makes light. 

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