Tuesday, August 25, 2009

Harlie's First Dental Appointment

Last Thursday (August 20th), Harlie had her very first dental appointment. I was pretty darn nervous. While I tried to think positively, I had fully "prepared" myself for major damage and decay in there. Here's why... I've heard that Goldenhar kids tend to have bad teeth.

1. The teeth are overcrowded because of the underdeveloped jaw. There's just not enough room in there.
2. For some reason, they tend to have thin enamel, which wears away fairly easily with constant vomiting (years, and years of daily vomiting). Seriously, the amount of vomiting I'm talking about would blow your mind.
3. She doesn't eat by mouth. And eating by mouth and chewing actually helps keep your teeth clean.
4. For the first two years of her life, we couldn't get in her mouth to brush her teeth. We tried, and did the best we could. But, because of her bone anomalies (missing part of her jaw structure on her right side), opening her mouth wide enough was impossible.
5. There's spotting on her front tooth, and with the millions of antibiotics and medications she's been on, I thought they might be to blame.

So, while I tried to think positively, I knew that I had to brace myself for something ugly.

I've been going to the main children's hospital here in Richmond for a while now - for nutrition appointments and feeding and speech therapies. It is not a full service hospital (like in DC). It provides outpatient services (therapies, feeding program, etc.) and it is a long term care facility for children who cannot live at home due to their complex medical needs. And every time I go there, I walk by a sign that says "Dental Services." Finally, I stopped and made an appointment.

They were AWESOME. I will totally take Murphy and Cooper there from now on. Seriously, this doc was GREAT! She asked me to tell her a little about Harlie and to tell her my concerns. She really took the time to explain everything to me - and what it means for Harlie. She told me about how most antibiotics are fine (there is really only one that does damage to the teeth, and it is only used in absolute life saving situtations because it has many bad side effects). So, the spotting on her front tooth is not due to her meds. And she told me to brush with a little baking soda once a week. Good to know.

So, she did her exam and said that her teeth LOOKED GREAT! I couldn't believe it! I still can't believe it! She didn't see any evidence of her enamel wearing away due to the vomiting. Wow! The only thing I can think of is that she's been on Prevacid since she was about 8 months old or so, so maybe that's helped keep the acid in check. At any rate, I am very happy. Then she showed me how to brush her teeth and sent us on our way. We'll go back in six months. Way cool. Seriously.

Now tomorrow I have Harlie's Eligibility Meeting to see if she qualifies to receive services from the public school system. All I'm hoping for is that they will give her speech therapy. Common sense would say that OF COURSE she qualifies for services! I mean, DUH! But, evidently it isn't that easy. This meeting has been weighing on my mind for several weeks now.

The thought of me sitting in a room full of people making a decision about my daughter when they haven't even met her, just kind of gives me the creeps. It's just a weird thought. They are going to read some stuff about her, have me talk about her, and then will determine what services she needs, or doesn't need. If they decide that she does need speech therapy, then we will write her Individual Education Plan (IEP). If they decide that she doesn't "need" any services, then I will have to appeal. Because, clearly, she needs as much speech therapy as she can get.

The whole process is just weird. It makes me feel like we are being judged. Like I am being judged as a mom and caregiver. And like Harlie is being judged as a little girl. I know it isn't really like that - but that's how it feels. All her doctors and any who know her, knows that she needs speech therapy (along with a lot of other stuff). But this group of people will ultimately make the decision. Kind of makes me think this is how socialized health care would feel like. Ew!

Well, the meeting is in the morning and I need to finish "preparing." Wish me luck!


Grandma said...

Our prayers are with you this morning. I feel so bad that you have to go thru this meeting but you are an advocate for Harlie and if anyone can convince them of Harlie's needs..It will be you. Good Luck!

Beverley said...

I have been through this series of meetings several times in the past for children who have been here and for Leyda.....I personally believe they have to say things like "she may not qualify". Leyda qualified easily and they even said so. We continue with private therapy and shall do so as long as we can.

Hope today goes well....do you have a photo that you may be able to share?

Donna said...

Good to know about the dentist (and the baking soda!) our dentist is on South Side and it's such a pain!

Good Luck this morning - can't wait to hear all about it (do you have your powerpoint presentation all ready?!?) I personally despise IEP meetings, but I have no doubt Harlie will get what she needs with you advocating for her!

Susan said...

That's quite a relief to know her teeth check out okay. Ainsley's dentist sees her every 3 months because he is concerned that if she ever needs dental work it would have to be done in the OR because she wouldn't be able to keep her mouth open for the work to be done. Makes the stakes rather high for good oral hygeine.