It has been a little while since I have posted an update on our grandsons progress. Since several have asked me lately I decided to post an update here. His mother was finally allowed to hold him for the first time since his birth. He has came a long way but he still has a way to go before he can be released to come home. To recap he was born with a genetic condition known as 22q11.2 Deletion Syndrome, also known as DiGeorge Syndrome. Skylar has a congenital heart defect called Tetraology of Fallot with Absent Pulmonary Valve abbreviated as TOF/APV. You may have noticed that I have changed the background of this blog to hearts. I did so in support of Congenital Heart Disease awareness. Skylar has a tracheotomy tube to assist his breathing. He will most likely come home with that in place. The doctors have been optimistic that he should not need another heart surgery until he reaches the age of five. He is a little spitfire and has been known to hold his breath a time or two in a fit of rage. We appreciate all the prayers and positive thoughts we can get. We hate it that our little guy must spend his first Christmas in the hospital but we are looking forward to having many more Christmases with him in the future.
No comments:
Post a Comment