Where we are now

This post is about where we are in regards to Jesse's diagnosis. It's just a timeline of the events that have happened up until now.

Craniosynostosis is rare. It's so rare that there is only one surgical team in San Diego that can even do the surgery. They are at Rady Children's Hospital.

The surgery requires several surgeons. The main surgeons are a neurosurgeon to remove the skull from the brain and a craniofacial surgeon to restructure the skull.

June 29, 2011
I called to set up an appointment with Dr. Cohen who is the Surgical Director and Chief of Craniofacial Surgery at Rady Children's Hospital. His first available appointment wasn't until November. So I opted to get the next available appointment with his associate Dr. Broder. Even then, the first appointment wasn't until September. So frustrating.

A woman on a message board suggested that I try to get in with the neurosurgeon, Dr. Meltzer. She thought that if I could get in to see him and he felt Jesse needed to see Dr. Cohen earlier that Dr. Meltzer could get him in. So I called and got an appointment for July 21st. I also set up an appointment with the craniofacial team's neuro-ophthalmologist Dr. O'Halloran since my pediatrician wanted me to see an ophthalmologist. That appointment is on July 11th.

June 30, 2011
I found an email address for Dr. Cohen, so I emailed him photos of Jesse and asked if I might be able to get in to see him sooner. He emailed back the same day and said that he was lecturing in Japan but he had let his nurse Julie know to get me in sooner.

July 1, 2011
I didn't hear from Julie, so I called. She is on vacation until July 5th. So I'll wait until then.

July 2, 2011
I've heard all kinds of wonderful things about a craniofacial surgeon in Dallas, Dr. Fearon. I emailed him photos of Jesse and asked for his initial impression.

July 5, 2011
Julie called and I have an appointment with Dr. Cohen on July 20th!

July 6, 2011
Dr. Fearon from Dallas emailed me back. He of course had the disclaimer about diagnosing via email, but stated "it appears to me that you have a completely normal son, who does happen to have trigonocephaly from metopic craniosynostosis." Later he states "Given what I see in looking at the pictures that you sent me, I believe that your son does need surgical treatment." This is the first official diagnosis for Jesse and just makes it feel all that more real.

I called the nurse coordinator, Julie today for Dr. Cohen and Dr. Meltzer and she hinted that Jesse would need surgery as well. I asked Julie if it was necessary to see Dr. Meltzer since I'm seeing Dr. Cohen. She said that if Jesse needed surgery that I would need to see Dr. Meltzer so it would be better just to keep the appointment for now. I told her that I was pretty sure Jesse would need surgery and she said, "I saw his photos". I kind of took that as a hint that she felt surgery would be required as well. Not that I didn't know it already.

Second and Third Opinions
I'm not comfortable only have one choice for little Jesse. So I researched and researched and found some other teams in LA. I called and set up appointments with them as well.

Here's the list of appointments for Jesse. I'll make a blog post after each appointment.