Craniofacial Team Appointment.

I always feel weird when I say "Craniofacial Team". Every time I say it, I find myself visualizing a team of men wearing jersey's with jaws, lips, mouths, teeth and ears on them.

Anyway.

We had a appt with "The Team" today.

The kids played SO WELL in the waiting room. Allen was in charge of Little J and I hung with Doodles. At one point I told Allen if he got tired of chasing J to let me know and we could swap. He immediately said "oh okay let's swap". He hands me J, I grab a book to read to him, when I smell a familiar stench. Allen sees me make a face and busts out laughing. That's what I get for offering to swap babies. I get the stinky one. Just like a man eh?

I was SUPER impressed with the staff at the office. The head nurse came out and APOLOGIZED profusely for not getting us back at our scheduled appt time. They were down one room today so we got bumped out of the first batch of 8 am patients so we had to wait until almost nine to get into a room. While this wasn't what we had planned it was TOTALLY fine since they were so incredibly nice about it.

Since when does a doctor's office apologize for being behind AND THEN explain WHY they are behind?

TWO THUMBS UP TO ORLANDO'S CRANIOFACIAL TEAM.

Makily wore her big girl bows and we got TONS of compliments on how cute she was.

As always they find "something" that needs to be done to my kid.

*sigh*

First off the ENT on the team wants her to get a new set of tubes. I knew they were not functioning well but today he discovered they are totally out and Makily has fluid behind both eardrums. I am sure everything sounds like she is under water.

In the waiting room.



So I have to call her ENT for an appt to set up tubes.

She did so well the last time that I am not too terribly concerned. I just hate the sedation of it. She always scares the crap out of me but since she did so well last time I am sure it will be fine.

Do you like how I am trying to convince myself that I am not worried in the least? :-)

Daddy and J making Makily giggle!


The plastic surgeon said her mouth looks great, cleft repair is perfect (nothing like giving himself a patt on the back LOL). He did say that she is missing some bone in the front region on one side of her gums. I of course have never noticed this and I can't even see it (he said he can feel it and recognized it immediately). He said when she is "8ish" she will likely need a bone graft or that part of her gums could collapse. Sounds like fun. Anyway I am not even going to let myself think about it becuase it's years away and not doing any harm right now.

Our happy little patient.




I was REALLLLLY impressed with the dentist on the team. He and the orthodontist were very nice. He wants to get Makily in for x-rays of her jaw/gums/teeth etc. It's very common for ES kids to have any and all kinds of dental issues including missing adult teeth, gum and enamel problems etc etc. The x-rays will tell them what teeth she will have once the baby teeth fall out. The plastic surgeon seemed very convinced she would need braces when she is bigger. The dentist was not as sure and also feels like she will be 8 or 9 before her baby teeth even start falling out since she started teething so late (first tooth was not until she was 18 months old). He will do a cleaning the same day as the x-rays. I am not looking forward to that but he was not as worried as I. He said with developmentally delayed kids he just knows in advance he will need more time. He is going to allow us in the room with her so this will help. He said the discoloration I have noticed on a couple of her teeth is from being 100% g tube fed AND probably the enamel issue that most ES kids have. Hopefully the cleaning will take care of that for now.