Champion is almost three years old and our first child. The day after he was born we found out that he had tetralogy of fallot, a congenital heart defect and would require open heart surgery. At four months of age he underwent a full repair on his heart. While in the hospital recovering from the surgery, we learned of Champion’s full diagnosis, Miller Dieker Syndrome, a micro deletion (a small piece is missing) of his 17th chromosome.
Champion is full of joy. He seems to always be ready to offer a smile. He loves to laugh and will start laughing just because someone else is laughing. He enjoys looking at books, turning the pages, and listening to the stories. His all time favorite activity is to be in his walker. Whenever we ask him if he wants to go in his walker he gets so excited, starts kicking his legs, and almost jumps out of our arms.
Champion is very determined. He will work hard to find a way to do something that he wants to do. Right now he is very motivated to be mobile even though it is tough for him. There have been many things that looked like they would be impossible for him to do… and then all of a sudden seemingly out of nowhere he would start doing it.
For example when he was very young he would only turn his head to one side and it seemed like he would never look the other way. All of a sudden he did. Then it seemed like he would never have head control. All of a sudden it became easier for him to hold his own head up. It seemed like he would never clap his hands and one day he did. It seemed like he would never be able to walk in his walker, and then he started. Below is a picture of him on the day he decided to hold himself up in the shopping cart.
There are so many examples of him accomplishing things that seemed impossible that whenever I get discouraged I just remember the victories he has already experienced.
Currently he is fed by g tube. We are hoping soon for him to be eating by mouth and be able to say goodbye to the tube. This is one of the main areas of focus for us right now along with Champion’s mobility and speech. We are hoping for the day when he surprises us with balance and is able to sit and walk unsupported. In the meantime we work with him regularly using the techniques learned in therapy and keep being surprised as he picks up a new skill and shows us that miracles still happen today.