Monday, February 12, 2007

Craniofacial Team Appointment

Today was Rachel's yearly Craniofacial Team Appointment where we see the entire team of doctors who have or will have some part in her treatment through the years.

The last two years we've have our Craniofacial Team Appointments, we've waited for hours on end. We came prepared with the portable DVD player, several movies, the laptop, and magazines. This year, the speciality offices were at a new location and we were in and out of there, seeing four doctors, a case manager, and a social worker in under 2 hours!...Record Time!! We first saw Adrianna, Rachel's speech therapist. It was good to see her as we stopped going to speech in early November due to our insurance deductible being raised from $250 to $1000, and us being responsible for the majority of the speech bill. Knowing Rachel probably wouldn't talk for Adrianna and show her how far along she has come in her talking, we've been videotaping her over the last month and made a DVD. Adrianna was very happy with how far Rachel has come. No glottal sounds (back of the throat sounds) that she once made with the words 'cracker' and 'cookie'. We asked her if she thought we should get Rachel back into therapy, and she said no. We've been concerned about her talking because we see Gracie, who is 2 months younger, and talks non stop, putting many words together, and making complete sentences. Adrianna explained that Rachel's personality is that she is a "doer", not a girly girl who needs to use a lot of words, if she wants something, she's going to get it. Everything she said made perfect sense. I also had a concern that come September when Rachel starts preschool, would she struggle due to her speech, and Adrianna reassured us that preschool would be good for Rachel and she'd pick things up very quickly because she'd constantly be with her peers, learning and doing new things. But for now, she's doing excellent and said she'd like to see her in 6 months and re-evaluate her then.

Next up, was the plastic surgeon, it wasn't Rachel's plastic surgeon, but another one part of the team. She looked over Rachel's mouth and nose. The next step as far as plastic surgery goes would be a nose revision, aka nose job, when she's 4 or 5, just before she goes to Kindergarten where kids can start to notice things and perhaps make fun of Rachel. Time spent with the plastic surgeon was short and sweet.

Another doctor part of the team, is a general pediatrican. He gave Rachel a once over, listening to her heart, lungs, checking out her belly, her eyes, ears, mouth. Rachel's tubes in her ears are out in one ear and in the other ear, the tube is laying in the ear canal in some wax. Unfortunately both ears have fluid in them and we'll need to see the ENT (who wasn't available for today's appointments). We'll repeat a hearing test and then see the ENT to see whether or not Rachel will need to have the tubes replaced. But other than that, everything checked out just fine.

The final doctor we saw was the pediatric dentist. We found great favor with him, as Rachel had just been to the dental clinic last month and we've been brushing AND flossing her teeth. Rachel cooperated in opening her mouth so well, that we showed us which tooth Rachel is missing and where a bone graft would go and when, etc. Continued dental check ups every 6 months were recommended. And a little further down the road, a bone graft will be done between the ages of 6 and 8, all depending on when her permanent teeth start to come through.

That was it as far as the doctors we saw. Rachel cooperated and did so well with each poking and proding from all of them. The next person to visit us was the case manager for the team, asking if we had any final questions, concerns, etc. I took this opportunity to talk to her about my desire to be a part of a support team.

Months ago, the Lord laid a desire on my heart, the desire to be of support to parents of children born with a cleft of some sort. When Rachel was born, we were very overwhelmed to say the least. It would have helped to have a parent who has been there to talk to. Talking to a parent who's walked that road is a lot different than talking to medical personnel who only talk from the medical standpoint. We told the case manager of the couple we met at Lowes, and how encouraging it was to talk to parents that knew what we were going through. We want to be like that couple at Lowes, encouraging to parents who are at the start of this journey.

I've been working on organzing my pictures of Rachel - pictures of what she looked like at birth, before and after pictures of all of her surgeries to date, her in arm restraints, etc. And with the help of a friend, I plan on making a scrapbook, and will have this book to share with parents who I might come in contact with. If someone had showed me a picture of how great their child looked after surgery, it might have helped with some of the scariness of the unknown.

We talked for a while with the case manager, and then she had the social worker come in and talk to us. She actually had a mom this morning that was pretty overwhelmed with it all and mentioned how it might have helped to have another mom to talk to. Long story short, the social worker took my name and phone number and will begin working on putting together a support team of parents. I'm so excited!

This was our third appointment with the Craniofacial Team. That first appointment was pretty overwhelming and our questions were numerous. Last years appointment was pretty easy as Rachel had three surgeries behind her, we had questions mostly in reguards to her speech, and this year, we had a couple questions, but nothing major. They say it'll just get easier and easier as the years go by. Once again, I'm so glad to be where we are today, than where we were two years ago at our first appointment, overwhelmed and afraid of all the unknowns.

6 comments:

Kim said...

I'm glad the appointment went so well for Rachel and you!

Btw, which tooth is missing?

Theresa said...

That's awesome! Glad to hear she's coming along so well! :)

We had our appt in November, and it went well too... but we're going to have to have a couple of extra surgeries. I was a little discouraged about that, but there's a reason for everything. :)

E has an extra tooth! Maybe he got Rachel's missing one. :D

Darcy said...

She is missing the tooth right next to the central upper teeth.

What kind of extra surgeries will Ethan need, are they still thinking that fistula will need to be repaired down the road.

Melany aka Supermom said...

That sounds perfect. So glad she is doing so well. What a great thing you will be doing for other parents. I can only imagine how scared on must be of the unknown

Theresa said...

The fistula will definitely need repair, but they're waiting until he has to have another surgery to do it at the same time. No reason to put him under and extra time. And I'm so on board with that. :)

He'll also need p-flap surgery for speech. His vocabulary is on target, but he's pretty hyper-nasal and hard consonants are gutteral. He has to wait on that one too... probably two more years.

And then the lip revision like Rachel's... sometime before kindergarten. Actually... all of these will happen before kindergarten, but we get to wait a little longer.

I'm sure he'll need new ear tubes at some point too. Those look really good right now.

Currently we're fighting sinus infections nearly constantly. His pediatrician refers to his sinuses as a "petri dish" which I find rather amusing. But he cultures everything. The cool part though, we actually got to see x-rays of his head. That was fascinating. :)

Anyway... that's all. Fun times.

I'm so glad Rachel is doing so well!

Diana from NC said...

Hey Darcy! I'm still following Rachel's blog, and I'm very happy to hear how well her appointment went!

If it makes you feel better, Katie has been VERY slow on speech, with no physical reason for her to be. She even goes to speech therapy to help her along. But, her preschool has been great with her, and are really helping her along. I'm sure Rachel will do great!!! :-)