Cleft Craniofacial Team

We seen the 7 doctors at Choc's Cleft Craniofacial Team. It was very enlightening.

The ENT which I will not let touch my son wants to take out his Adnoids. Which is what my current ENT told me would happen. I will refer Zach back to my ENT due to the Cleft Craniofacial Teams ENT seems to give wrong answers and not know much.

The Genetics Doctor stated that if I want to have an assessment done for Autism to take him to OC4Kids. I called and they stated they only handle people who live in Orange County. Nevermind, all of Zachary's doctors are at CHOC in Orange County. Then I tried Gottschalk in Irvine and they don't take my insurance. So what is someone to do??? My other option is go to Casa Colina and pay $500.00 for initial visit... I don't know about anyone else, but I don't have $500.00 in cash... So this is on HOLD.

The Speech Pathologist stated Zachary has Apraxia, but the Genetics Doctor says he doesn't. So tell me which is it???? Who knows????? She told me I need to find a Speech Therapist to come into the home. I've been looking, but not successful...

The Orthodontist and the Plastic Surgeon hmmmmm this is where Zachary's surgeries will be. First of all, we need to do a sleep study... If Zachary has apnea then they will immediately do surgery and pull out his jaw. This will be done sooner or later but if he has apnea will be much sooner.. They would put something in his jaw and I would have to turn once a day. This supposingly won't hurt him, but I am sure it will kill me... Eventually, around 8 or so, he will have his pallet pulled down and his submucosal cleft fixed and everything wrong with his mouth corrected. These are the surgeries which will be a challenge.

The reasons I don't like this clinic is in the report they sent me states wrong things. I don't know if this normal but they stated post surgery for a VSD. I believe that is Ventricle Septal Defect which my son never had surgery for. So this bothers me a little. They state a couple other things which aren't really big but bothersome.

I will update soon. Getting settled soon in our new place, so I will able to update more often.. Take care..