(Posted November 7, 2020)
Cash was born on February 10, 2019, in Bar Harbor, Maine. He was an extremely easy going and happy baby but we could immediately tell there was something a little different about him but nothing that anybody could really put their finger on. Everything we had concerns about was deemed, as “a little odd” but not overly concerning but the most concerning was the fact that he had an inability to cry. He also was very small, had some flattening of his head, as well as some upper body weakness. We first received the diagnosis on Friday the 13th 2019 when he was 6 months old and immediately everything seemed to click. We are very blessed with a great pediatrician who has a very proactive approach so Cash had already been in physical therapy since he was a month old and was already involved with many specialists. However, after his diagnosis, we were able to get the proper specialists involved and had a clear idea of what to look out for. As far as medical procedures he had a bronchoscopy, under anesthesia, to diagnose the tracheomalacia and laryngomalacia, and a small hypospadias repair and are keeping an eye on his ASD and coronary artery and will perform surgery if they feel they are getting worse. But as of now, no major physical medical issues!
Unfortunately, due to COVID-19 Cash is not able to go to daycare or preschool but the upside of that is he gets to enjoy a lot of time with his Gam Gam. Currently, Cash is involved in an early intervention program for his speech delay and will be seeing an OT. He was just recently discharged from Physical Therapy as they felt he was showing enough strength on his own! At 21 months old, he’s an extremely active toddler, always running and climbing, he loves playing outside and is always on the go! He loves music and playing guitar with his daddy, big trucks and tractors, Mickey Mouse, his dogs Zeppelin and Wrigley, and cats Bodhi and Hobbes. He is in such a happy mood all the time, he’s silly and laughs all the time.
We are thankful that he is currently not on any medications, but he has a hard time gaining weight so he is still on formula, and has some high calorie shakes to help him gain. His favorite foods are waffles, grilled cheese, and blueberry muffins all of which just recently helped him hit 20 pounds, we are so proud of him for that!
We are so proud of Cash’s ability to walk, run, and climb! He was extremely weak and had a very hard time sitting up and rolling over. He worked very hard at physical therapy to get to where he is today, our next step is focusing on his speech, and we hope to hear him talking soon!
Cash is such a happy positive little boy and nothing seems to faze him! He takes everything in stride and it makes it all that much easier for us as parents to handle anything that comes our way. My advice to other parents is, “Never stop advocating for your child, and reach out to other parents of 22q children as well, the support system has been truly amazing!”