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After what seemed to be a normal pregnancy and a very quick birth Caleb was here. He was exactly perfect and so loved. As we were preparing to take Caleb home to his big sister Evelyn his doctor noticed a heart murmur. It seemed to be getting worse so they ordered an echo to be done before we could go home. During this exam two heart defects, a VSD well as a PDA were found. Although the tech was only doing a heart echo, they noticed that his thymus was almost none existent and alerted his doctors. He was imminently taken to the nicu and put on oxygen. During this time the normal newborn blood screenings came back with a positive SCID result. Further testing resulted in the finding of his 22q11.2 defect when he was only 6 days old.
As a Family we faced two really big challenges with his diagnoses of 22q. The first being the fact that he had a severally lacked immune system that was part of a chromosome defect and not something that we could fix. We had a 3 year old little girl at home who’s world was being rocked and she just wanted her mom and brother to come home. Trying to get people to understand that they could not be around him or touch him was not because we were being over protective parents. This was a matter of life or death for him. His sister loved him so much and truly did not care that she could not share him with others she just got to keep him all for herself.
The second was his feedings. Caleb had an inability to swallow and was rapidly going downhill. He was put on the failure to thrive list. Caleb received an NJ feeding tube and once he started to gain weight and was able to grow some a G-tube was placed. However even though he has the G-tube it was a full time job hooking him up and disconnecting him every hour on the hour 24 hours a day. This was hard on mom and dad but even harder on Caleb since his sleep was interrupted to undress him to get to the port. Caleb’s Gma kept him for a weekend so mom and dad could get some much needed sleep. When mom Anna came to get him she discovered that ALL of his little onesies had BIG gaping holes in them. After much trial and error clothing with hidden zipper access was made and every one of Caleb’s medical teams wanted the clothing. Out of desperate need for sleep, normalcy, stylish and discrete clothing C.C. Moo was created. Now available to the public all over the US in sizes up to 12 with lots of fun fabrics and options. Not only is there clothing for tube fed children but also clothing for central lines and picc lines well.
Some of Caleb's greatest challenges have been his feeding due to the inability to swallow, reflux, speech, his delays in motor function, sleep, and overall growth. Once Caleb's G-tube was placed and his heart defects were repaired he started thriving, growing and gaining motor function.
Caleb's biggest achievements over the last 3 years are that he is finally stable and maintaining on the growth charts with the help of his G-tube, he is successfully swallowing foods with little to no aspiration for improving his oral caloric intake, and is working hard on talking with the help of speech therapy. The biggest achievement for our family is Caleb becoming the face of C.C. Moo LLC. a medically adaptive clothing line for children with tubes created by his Gma and I (mom) allowing us to help other children like Caleb with tubes of any kind giving them stylish and discreteness in their everyday life.
22q has taught our family to NEVER take things for granted and to always appreciate the little achievements. We have learned to slow down in life and live one day at a time.
Being a part of the 22q Family Foundation has helped us realizing that there are other families out there like ours who live with the challenges of 22q every day and that even though there are struggles that come with it there are also very positive outcome.
Anna personal email contact for families to connect email@example.com
Eileen personal email contact for families to connect firstname.lastname@example.org
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