Monday, January 26, 2009

Craniofacial Appointment

First of all, Thank You for all your thoughts and prayers for Rachel's appointment today. Your prayers are very much appreciated!

Rachel's appointment with the Craniofacial Team went really well. We arrived at our scheduled time of 1:00 and were in a room by 1:30. The first doctor we saw was the Team Pediatrician. He had just one medical student with him and she asked a lot of questions about Rachel's history, her sleeping and eating patterns, etc. The Pediatrician looked Rachel over, lungs and heart were good, ears are good. Although he says it looks like the one remaining tube in Rachel's right ear is out. We went over her hearing test from a couple of weeks ago, and he was pleased with the results. We talked about the recent ear infections and he said with it being cold season, it's expected, but once we're out of the cold and flu season, and if she continues to get ear infections, then we may need to consider tubes again. But for now, we'll just watch her and have her hearing retested in 6 months to be sure she's still hearing good. The next person we saw was the Speech Therapist. Unfortunately, since our last Craniofacial Team appointment, the Speech Therapist we'd been working with has left, so this was a new person for Rachel today. She had Rachel look through a book with her and she asked her what things were, what they were doing, etc. It was a fun way of getting her to talk and her watch how she pronounces things, positions her mouth, etc. The outcome is that there are some areas of concern. For one, she has an underbite that is affecting the position of her tongue when it comes to pronouncing words. And then there are some other sounds that just need work. While a concern, it's not a big enough concern to warrant speech therapy through her. She suggested we seek it out from the public school system where speech is available free, in addition to working with her at home. We will soon be starting the process of applying to get her into the school where Hannah goes, and once we're accepted there, we'll seek speech therapy at that school. And of course, we'll start really working on her at home.Rachel was doing so well in cooperating with the doctors and coloring in between, she was even happier when she found a half eaten bag of M&Ms in the backpack. And wouldn't you know, it was the dentist who came in next. He tried looking into her mouth, and got a good look at her cleft aveolar ridge and misplaced teeth, but he did question if the spots he was seeing were fillings or just M&Ms. LOL. The bone graft to the aveolar ridge won't be done until she's around 7 or 8 years old, so she has a while. Rachel has an official dental appointment on Wednesday for a cleaning and thorough exam. He was happy to hear that.

Next up was the Plastic Surgeon. It wasn't the plastic surgeon who's actually done surgery on Rachel, but she was very personable considering she's a surgeon and took the time to answer our questions. We've been told in previous Craniofacial appointments that now is a time that they consider doing a nose revision to touch things up that might need fixing. Ultimately, it's up to us. There are things that can be done, but after talking with the plastic surgeon, they wouldn't necessarily be fixing the things we see wrong with Rachel's nose. We can wait and combine a nose revision when she has the bone graft in a few years, or we can do it now. Our biggest concern is that kids might make fun of her nose. It's squished, a little uneven, and some days looks flatter than other days. We were talking over dinner, that if hold off for now, the beauty of going to a school that is year round is if need be, we could schedule surgery for when she's off track. It's something we need to really think about and pray about. But it was nice to have our questions answered.

Unfortunately, the ENT was not at Craniofacial today. He was one of the doctors I had specific questions for. But thankfully, the Pediatrician told us up front ENT wasn't there and we were able to ask him our questions.

We saw only four doctors and were out of there in about 2 1/2 hours. Because we're return patients, it gets easier and easier each year I think and it's not an all day event like the very first time we saw the team. But that doesn't mean we don't come prepared with a backpack of things to do and snacks! Daddy's iPhone came in very handy too for all three of us! So in review, the appointment went great. Have some areas in speech to work on, a hearing test in 6 months, and a decision to make/pray on in regards to a nose revision at this time! Next team appointment....January 2010!


Joy Howse said...

So glad things went great. Rachel will continue to be in my prayers as always. And I pray that you will know what God's will is for in regards to surgery and that you will feel at peace with whatever decision is made. As mommies we just want the best for our little ones.

Allison said...

Sounds like a great visit! Have you come to a decision regarding the nose revision? what ever that may be, I know you'll do what you feel is best for Rachel and your family, best wishes there!

And . . . here's the canned message I've been leaving for everyone : )
I noticed your link to our blog is still for the older address, so, if it's not too much to ask, I would really appreciate if you could link us up to the new one . . . that way folks can find us again, thanks so much!


Darcy said...

Allison, did you want me to use the link to the "We've moved blog"?? That's the only blog listed in your profile.