The Great Adventures of SUPER D!

We welcome Dylan’s mom as a guest blogger today to share her story.

When Dylan was born on January 10, 2001 he was a very sick baby. The doctors weren’t sure what was wrong or if they could help him. While in the NICU, Dylan was diagnosed with Moebius Syndrome. It’s a rare condition that effects the cranial nerves that control the muscles of the face. He had several surgeries including a gtube placement, ileostomy,  and a trach. He’s a tough kid though and after three and a half months in the NICU, he got to come home for the first time.

Although he had a few bumps along the way, with feeding issues mostly, he has been fairly healthy. However, in January 2014 Dylan hit puberty and it sent his little body into a tailspin. His small intestine slowly buy surely stopped working. He is now TPN dependent and has another ileostomy. He’s spent the majority of the last few years as an inpatient at Children’s Mercy Hospital in Kansas City. He has also been seen at Boston Children’s Hospital and the National Institute of Health and Nationwide Children’s Hospital as we’ve searched for answers and solutions.

The doctors have just recently told us that his condition will continue to worsen and will probably require a gut transplant, a fairly new, risky procedure. The doctors say at this point the best thing we can do for Dylan is try our hardest to keep him out of the hospital and spend lots of time as a family together. He has come a long way from that little sick baby that doctors weren’t giving much of a chance of survival to a smart 15 year old. We know that every day we spend with Dylan is a gift and we enjoy each and every gift that the Lord gives us.

Dylan’s cake was provided by Sugar Angel Rosalynne Rogers with Ronnie’s Cakes in Raytown, Missouri. The family shared, “The cake Dylan received for his 15th birthday was by far the nicest cake anyone in our family has every had. It was beautiful and delicious. Dylan was discharged from the hospital on the morning of his birthday and the baker was nice enough to deliver the cake to our house. It was a wonderful way to celebrate both Dylan’s birthday and his homecoming.”