THOMASRetrun to 22q Stories
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I had polyhydramnios and failed 3 inductions, and was one week past the due date when Thomas was born on September “22,” 1997 via C-section. As soon as I saw Thomas across the operating room, I said “Is he supposed to be that color?” as he appeared slightly ashen. A couple hours after birth we were told he couldn’t suck or swallow and has “DiGeorge Syndrome.” A day later, he was diagnosed with a large VSD and interrupted aortic arch and had these heart repairs at 5 days old. His heart repair was done by pioneering Dr. “Buzz” and his team at Children’s Hospital Minneapolis, and his heart is doing great thankfully! Thomas had issues with feeding until age 4; severe speech delay and immune deficiency (still has) with many infections, and was born without a thymus gland. The most severe was RSV, which led to the finding that he was overdosed on his vitamin D and Calcium for hypoparathyroidism, which has become nephrocalcinosis and kidney stones. He had a left inguinal hernia repair in 1999. He struggled with low motor and muscle tone; has an I.E.P. at school; had speech/O.T. and still receives special education with a great team of teachers and special needs kids. They have ‘field trip Friday’ which he loves! Thomas’ worst diagnosis came in 2005: ITP – an immune blood disorder (low platelets). He’s tried almost every treatment and nothing has worked. In 2012 he received the diagnosis “Evan’s Syndrome” another blood disorder, where two, or all three blood ‘lines’ are low – WBC, RBC and platelets. Of all he’s been through, the bleeding disorders are the worst. He was hospitalized with his first pneumonia in 2012, with complications of fluid in the lungs. He was sent home with a PICC line and I administered his medications. Likely I forgot something, there’s so much to list when it comes to 22q! Thomas is so strong, so brave, so positive in the face of illness; he remains kind, thoughtful and loving no matter how sick he gets. He is my reason for being on this earth: Thomas, you are my teacher, my hero, my beautiful son, I love you and thank you.