We met with a cleft palate team today for Zoya and we have decided we are going to WAIT at least a year or two to before we attempt surgery.
First of all, we were surprised to find out that it appears a partial repair of the soft palate had already been done at some point. Perhaps when she had her lip repaired? The doctor explained that this was the most important part of the process anyway. He said that right now surgery would present more risks than benefits, simply because of how big the hole is and how malnourished she is. The hole in the roof of her mouth is a significant one, which means she would need to have a lot of existing tissue to extract from other places in her mouth. Sadly, she doesn't have enough existing mouth tissue to complete it now. The doctor feels that for the time being we can get her fitted with an obturator, or retainer, which would temporarily close up the hole so that she can begin to learn proper speech and eating habits while we fatten her up. Then after she gains 10 pounds or so, she will most likely be a candidate for surgery. He said that basically they only have one 'chance' to do it right and he wanted to set her up to be successful. Right now she is about 11 pounds she needs to gain to even plot on the growth chart! We have a long ways to go. We also met a speech therapist who prepared us for the reality of longterm speech issues.
Meanwhile, her eating continues to be a struggle. It seems the more comfortable she gets around us, the more she refuses to eat. She does like it when we feed her like a baby so for now we have resorted to making airplane motions with the spoon to get her to eat. Sigh. I have never EVER had a kid that doesn't want to eat, so this is a foreign concept to me. I haven't wanted to weigh her because frankly I'm afraid of what I will find out! However, we have noticed her ribs seem to be filling out a little bit, and a couple of the kids have mentioned her tummy seems to be 'a little fatter'. Should I weigh her? Maybe I should.
I was a little stressed thinking about winter coming up and not knowing how to dress Zoya. Her waist is about a size 3 MONTHS and her length is a 3T. My sweet friend Melanie volunteered her sweet mother who custom made several pairs of pants for her. She was THRILLED to have pants that we didn't have to pin in the back or that she didn't have to constantly pull up. I honestly don't think this girl has ever even owned clothes that fit her right. It is going to be a good winter! Thanks Mrs. F.!