Craniofacial Team Appointment

Rachel had her appointment with the Crainiofacial Team this afternoon. This is an annual appointment, one in which we originally had scheduled for September, but got cancelled and moved to today. The last time Rachel saw the team was when she was just 4 weeks old, so long ago, at the very beginning of this journey.

Wearing her new "My Surgeon Gave Me This Smile" shirt from Plotkindesigns. Everyone loved it! The appointment went well, once we were finally seen. We knew we would have to wait, in fact they called on Friday and moved our appointment from 1:00pm to 3:00pm, but it was well after 5:30pm before we were placed into a room. It was after 7:00pm before we even left the building. We saw a total of four doctors, the pediatrician, the speech therapist, the dentist, and the ENT. After already waiting for hours in the waiting room, and the waiting in between doctors coming into the room, Rachel had had enough. She kept pointing to her clothes and to the door, meaning she wanted to put her clothes on and leave. After daddy showing her how to use paper towels to create makeshift pants, LOL, she was trying to recreate what he had done. Unlike at our last team appointment, our questions were few. And those resolved around her speech. For being 17 1/2 months old, Rachel's words are few. Granted she's only had a palate for a few short months now, but the words are still few. Our concerns were valid. The Speech Therapist felt she needed a full speech evaluation and more than likely therapy to follow. She will also have a hearing evaluation to make sure her speech hasn't been delayed due to any hearing loss. That's not really a concern of ours, but it is pretty routine to do a hearing test right about now. She's pretty behind in her speech development, but it's nothing that can't be corrected with therapy. The pediatrician and ENT were pretty uneventful, both confirmed her ears look great and the tubes are still in place. The pediatrician got a good look at her palate repair, and so did we! Dr Martin did an awesome job on her palate repair. You would never know that her mouth was once a dark, deep, endless hole. Her palate looks perfectly normal except a straight line down the middle. The dentist took a look at her teeth (all 7 of them) and suggested that we get her established with a dentist to get her in the routine of being seen, etc.

They were passing out pieces of Valentine Cake to the patients and families, Rachel is enjoying her cake using a tongue depresser rather than the fork. Other than the issues with her speech and the recommendation to get established with a dentist, the appointment was pretty uneventful. I'm so glad to have been at today's appointment, at this point of having three surgeries behind us, than where we were at on September 27, 2004, at our very first appointment, just at the beginning of this journey.