S. in Jan. 2011
S. at the hospital in April 2008
We are preparing for S.'s yearly MRI and craniofacial clinic at the nearby children's hospital. During that time, we will discover how well his VP shunt is working, see how large his Chiari is, and come up with a plan for facial/neurological surgery. S. was born with an opening in his skull, between his eyes above his nose. When he came to our care, he was receiving medical services from a doctor in CA. Now that he is adopted by us and on our insurance, he is seen by a team of doctors in WA. And apparently doctors and surgeons do things differently all the time in rare cases like S'. And if you ask them, they will tell you that their way is the RIGHT way.
S. had a "patch job" in his opening. The neurosurgeon used some form of medical cement and pushed it into the hole to close things up. This left S. will a strange looking scar, but much better than the large bump full of CSF fluid that was there before. The team here want to redo things. They want to remove this patch, do a bone graft from S's hip bone, and reconstruct his face. We feel this is for the best, but are nervous about it at the same time.
Now, we have decided to refer S. to Make A Wish. I contacted our local chapter, found out what conditions qualified, and sent the local contact person S's doctor's info. We waited and waited to hear back. I bugged a little. Waited more. Then asked if MAW would contact our pediatrician instead, thinking he'd be less busy. We finally heard back that our doctor wrote he DID NOT QUALIFY. Huh? I called their office to find out why. A day later his nurse called with their explanation. Basically, they don't really understand MAW's definitions for eligibility. I argued a bit about why S. should qualify, but felt it might be better to wait to hear back from the children's hospital. They have all his information and have dealt with MAW quite a bit. I contacted the social worker who sees us every visit and found out that we must have given MAW the wrong fax number. The local chapter and hospital are now communicating so it's another wait to see what happens. S's wish, by the way, is a safe play ground to play on. I really hope he gets his wish. He's been through a lot in his short little life. And will be enduring much more in the near future.