Will’s Way, Life with Cornelia deLange Syndrome

After months of trying to coordinate an OR schedule for your ears, teeth and esophagus, we finally got you in for at least ears and teeth.  Back and forth to Boston and local doctors, countless phonecalls and emails.  Months on end of you in pain and everything moving impossibly slow.  Ultimately coordinating in Boston was a no go .  Ears and teeth were the main source of pain so we went local.  After being dismissive about the condition of your ears, your ear Doctor came out of the OR very impressed with how bad your ears were.  I’ve been trying to tell him for months, but I’m just the mom, so what do I know?  Inflammed tissue, infection, gunk and junk from previous infections and blocked with wax.  Also a blocked passageway from a nasal polyp. So new tubes and a thorough cleaning and steriods so hopefully you’ll start to feel relief.   Your teeth were in bad shape too, also causing pain.  3 baby teeth removed and several fillings.  Janary 4th 08.

 My poor little guy.  You’ve been dealing with so much pain it’s no wonder you’ve been mostly miserable.  I’m sorry it took so long to get you fixed up.

4ft 4″  68 pounds Height/weight at pre-op physical in Dec.