Evan

Evan is 6 1/2 years old. He has seen pediatricians, developmental pediatrician, opthamologist, dermatologist, neurologist, neurosurgeon, urologist, geneticist, and endocrinologist. He has had too many viles of blood drawn to count, had 4 MRI's, 1 CAT scan, 2 EEG's, 2 eye muscle surgery's, 1 skin biopsy, been hospitalized 3 times, been taken to the hospital 3 times by ambulance, had numerous x-rays, been in physical therapy, occupational therapy, developmental therapy and speech therapy in different combinations since he was 8 months old, and been poked, proded, and checked over more times than anyone would want. He has been diagnosed with Syringomyelia (fluid in the center of his spinal cord), asthma, and Chromosome 17q21.31 micro deletion syndrome (a small portion of his 17th chromosome is missing).

Evan had some appointments this week down at Riley's Children Hospital. Our first was a 23 hour EEG. Evan is always so tolerant of doctors and does very well but having leads glued all over your head would get to anyone!




He was less than thrilled with the new "hat" he had to wear but decided that it might be ok, after a few books. He is easily distracted:)

The nurse told me that I was lucky that our room had the "deluxe" bed. Yes, that is it folded up behind Evan. FYI...it didn't feel very deluxe to me! He was very ready to have all of this removed but I think that part was worse for him than getting them put on! He was a trooper though and was very happy to see that his hair was still under there:)

After our neurology appointment we decided to have a fun day! We ate at our favorite Indy restaurant, Buca Di Beppo! It was so yummy!

Then we headed to the zoo. I forgot how cool that zoo is and we had so much fun forgetting about doctors for a while. He thought about reaching in and touching the sharks but decided against it.

He did touch the elephant and said that it felt like a porcupine. I'm not sure how he came up with that.

We even got to watch a dolphin show. It was so nice to spend some fun time with Evan in the midst of so much not so fun stuff.

The next morning brought more lab work, an x-ray and an appointment with the Endocrinologist. It was a long 3 days but I came home to two other happy boys, cared for by my parents and sisters and a sparkling clean house (thanks to my awesome mom)! In most ways it was annoying that we had to spend 3 days going to doctor appointments but I spoke to one mom who said they had been there for 13 days! We really are blessed and it was obvious that Evan doesn't have it half as bad as some of the other children we saw at the hospital. We are so blessed with a 6 year old boy who despite all of these medical issues is learning and growing and even teaching us a thing or two. God gave us a special little boy and we are so very proud of him.