Monday, November 16, 2009

Cleft Palate Clinic

When Kate was discharged from CHOP in Dec of 2006, her plastic surgeon told us he'd like her to be seen by the Cleft Palate Clinic when she was 2 1/2. I made that appointment, but ended up having to postpone because of the stoma closure surgery this past April. They fit us in in November and we went 2 weeks ago having really no idea what to expect. It was fine, but I'm not sure we'll be doing this every year as they would like us to be. It's certainly not that we are not taking Kate's diagnosis seriously - it's just that she is SOOO typical now. Plus the issues she does have remaining (she does have a Sticklers dx, hearing and vision issues) are being handled through her pediatrician, opthalmologist and ENT). I'm not 100% certain we need to do the all day appointment thing, because it really seemed like it was as much for their research purposes as it was for her.

The first person to see Kate was a speech therapist. She asked Kate to repeat several words and phrases to her, held a mirror under Kate's nose and told us Kate was doing well. (Really? well golly we had NO idea - insert eye roll emoticon here). She said it was important that no air escape through Kate's nose during speech --- but didn't say why. Ok then.

Plastics was next. I have no ill will towards the CHOP plastics department (except for that one Fellow who really ticked me off after the palate repair but I'm not holding a grudge). They did a beautiful job on Kate's palate and her tongue and lip are no worse off for having a failed TLA way back in 2006. What irritated me about this day was their need to take a full medical history including asking about my pregnancy. Seriously guys? Kate's a got a chart there and all her procedures were done there -- why go through all this again?? Ok, I'll get over it. We saw Dr. Kirschner again and that was nice. He hadn't seen Kate since Dec. 07 when he repaired her palate. He came into the room, looked at her and said, "it's nice to see her without all the other acoutrements she used to carry around". Yes doc, it is isn't it? He asked her a bunch of questions, asked her to repeat certain words and phrases (during which she suffered performance anxiety and some words sounded very baby, and Kate doesn't sound baby at all) and held a mirror to her nose. He said her repair looked great and was working well. Apparently the palate is used as a "valve" during speech and hers was working perfectly - no air was escaping from her nose when she talked. He also told us there was a small chance she would need another repair at about age 13 - but since her repaire still looked good, that may not happen, just have to watch it.

Some kids with PRS don't have an ENT or maybe they only have one for ear tubes. That's not the case with us but we didn't see our regular ENT during clinic. I knew we wouldn't because he was doing a bronchoscopy on a Facebook friend's son that day. Anyway, we saw a Nurse Practitioner who we didn't know and who could NOT stop talking about how great Kate's speech was. She told us not only does she have no nasality at all to her voice (can be a very common side effect of formerly having a cleft palate) she verbalized and articulated more like a typical 4 or even 5 year old - not a 3 yr old with a repaired palate. That was nice to hear! She didn't keep us long (could see on her computer that we had history with Dr. Jacobs and continue to see him regularly) which was even nicer.

A long wait to hear the same results we heard in June when Dr. Jacobs office did the exact same tests -- mild hearing loss, keep an eye on it. Will do. We know she has some loss based only on the tests. Her speech is impeccable (see above) and she can clearly hear most things just fine. The loss occurs with some tonal things. We'll keep checking it, and I let her preschool know just to be proactive.

This was the real reason we trekked to this appt. While Kate's baby teeth have come in fine (and all are present), some are crooked and we have some concerns about there being enough room in her mouth for her adult teeth. Overall, the dentist said her teeth look good, keep brushing and see a regular dentist who you've made aware of her medical history and who will keep them aprised as well -- when they do get xrays of Kate's mouth, CHOP wants a copy. The orthodontist said she will almost definitely need work but within the same time frame as any typical child. The final determination will be after she has lost her front top and bottom baby teeth and the adult teeth come it. Likely about 11 she will get a set of braces or the like. Fine by us.

Social Work
This one cracked me up. They didn't require us to see genetics (even though she has a known genetic syndrome) and they didn't require us to see nutrition (even though she had a rough time with that) -- but they made us see social work. I guess it was so they could give us resources for support if we need, just seemed silly to me. But the social worker was lovely and I could have sat there and talked with her for hours.

Developmental Pediatrician
The pediatrician said she was doing fine, but took measurements of her entire face. Fine.

That was pretty much it. We'll definitely keep in touch with the dental people and of course ENT - still out to lunch on the rest.


Brad and Hailey said...

Wow what a day! It's nice having them group the apointments together but I know it's exhausting. I too wish that everyone would read the chart. I had an amazing cardiologist who read and printed off her chart and wrote his own qustions and notes in the side so he could get more info where he needed. I was quite impressed. We need more of those ;) It's great to hear she is doing so well!

Melissa said...

I to find some of the visits needed a waste of time...they tell me what I already know!!

Sounds like she is doing so great!

Susan said...

It's so great that she's doing so well!