On Tuesday, Jason and I spent a couple hours at Gillettes Children's' Craniofacial Unit. We had a consult appointment with 4 different specialists that will be part of Livi's care for her lip and palate.
We met with the orthodontist, plastic and orthodontic surgeon, speech pathologist, and a nurse practitioner. We learned a lot of really useful information about what to expect for the next several years. It was, no doubt though, just a glimpse of what we will really be doing. There was a simple outline of care that took us all the way up to preteen and possibly beyond. I think it's safe to say we'll become very familiar with this place.
The orthodontist talked about what her teeth and jaw might entail.
~ kids with her condition tend to have bad teeth as well so she will probably come home needing some general dental work.
~ Pretty much a sure thing she'll have braces as some point.
~ Kids with CL/P will see their upper jaw grow at a slower pace than the lower. If this becomes significant, she could need certain dental mechanics like retainers, bars, or headgear.
~ She may have extra teeth in there, permanently missing teeth, or just the right number. We won't know until she grows. She may not ever get her 2 missing front teeth, it just depends.
Then we saw the speech pathologist who talked to us about her speech and learning English.
~ She suggested we wait until her palate is repaired because it wouldn't make sense to begin before that.
~ If we ever have any questions about her learning English, we can call and get help with that as well.
Then the doctor who would do her surgeries talked to us. There was a lot of info from him. This is all under the assumption that she hasn't had anything done yet.
~ Upon seeing her picture, he started off by saying he could tell her palate was severe. :(
~ She will need a minimum of 3; probably 4 surgeries. First, her lip will be repaired. It is a one hour surgery with one overnight in the hospital. After about 6 mos. of healing, she will have her palate surgery which is also a one hour surgery with a one overnight stay. The third is not for sure, but because she didn't have any repairs done until she was older there is about an 80% chance of her having this one. It is done when the palate doesn't quite repair itself correctly after surgery. It doesn't allow for full closure or proper speech so it needs to be repaired. This is a half hour surgery with a night in the hospital. And fourth would be one at the age of 8-11 where she would have bone from her hip taken and put in her upper gum line to create an anchor for her adult teeth to grab onto and secure. They used to do this on the kids at about 3 yrs. old, but found that the bone in the gums would dissolve back into the body and be useless, so now they wait.
~ He said that he sees probably 1 child a week that is adopted from another country.....that's a lot....so I asked him what he felt about whether or not she's probably had any repairs done. His guess was that she's possibly had her lip fixed, but not her palate (which is what Jay and I have been thinking too). He said they used to not ever do anything, but that it became almost a pride thing for other countries to do the lip so that the child didn't reflect poorly on them. He said he rarely sees the palate done though. He also said that he would prefer at this point that it hasn't been done so she can have it here. We'll see soon enough.
The one I was most anxious to talk to was the nurse practitioner. She was there to answer all of our every day questions about her and caring for her. I had lots.
~ I don't need to be as concerned about what I feed her as I thought. She told me I can feed her the same way I would feed any of my other boys as toddlers. Just cutting up her food small and nothing to hard to eat/chew. Sandwiches, cheerios, bananas, mac n' cheese.....just all those things you would normally feed a 2 yr. old.
~ She said that Livi would probably surprise us how fast she eats and adjusts to her missing palate.
~ Because she's had this her whole life, she has learned how to adapt to her lip and palate. She told us about one little girl she met that actually would put her 4 fingers in her mouth against the top of her mouth to
create a palate every time she would eat something. That sounded so smart and interesting to me. I guess when you've had that your whole life, you don't know any different.
~ The best type of sippy cup is a Nuby which is exactly what I bought for her...YAY! Those are the kind that have a top like a bottle. She actually gave me some cups too especially for kids with cleft lip. They look like a regular cup but they are soft so you can squeeze it to an easier shape to drink from and they also have a scooped opening on the rim so you can see their mouth when helping them.
~ I don't have to worry about her choking any more than I would about any other child. She said that even though her mouth and nasal passage are open to each other, the throat and airway are still far enough back and separated that this is not an issue. Mostly what we'll see is food coming out of her nose when she coughs or sneezes or something. Well, that's happened with all the boys too. :)
All in all, we were very impressed and happy with the whole facility. Everyone was really great and we have a good feeling about it. This was so helpful to be able to find out the answers to all of our questions. I feel so much better about taking care of her when we're in China.
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