This morning, I got a phone call from Cody's surgeon. It took me by surprise because not many doctors will call you directly. His first words were, "I've been thinking about Cody and talking with his team as we all looked through his images." He spoke with our genetics doctor and they both feel like Cody would not tolerate the palatal lift. This was my biggest concern because he is so young and his mouth is so little. They wanted us to desensitize his mouth to get him used to it and I just didn't think he would do well with it.
He has a new plan. He has a colleague that he works closely with who would help him do a different procedure. He wants to work with a vascular surgeon to cut a small incision in his neck and move his carotid arteries over and pin them in place where they should be. After this is done, he would go in through his mouth and do the pharyngeal flap.
This scares me more than anything we've ever done. It's a huge decision. All his doctors are on board with it, though and want it done within the next couple weeks. We are meeting with the surgeon next Tuesday.
We have talked about holding off and doing it next year but looking at the pros and cons, we have figured out that doing it now will give him a whole year of intense speech therapy before kindergarten, the surgery wouldn't interfere with him starting kindergarten, we would increase the chances of him being healthy this winter because this will hopefully help his feeding issues as well, and he wont have to go another year with struggling with his speech. His speech therapist feels that if we wait a year his bad speech habits will continue and then be harder to fix in the long run.
So... give me strength please to get through this. I feel we are about to jump into something a little extreme and very scary and we will need all the prayers we can get. <3 p="">
He has a new plan. He has a colleague that he works closely with who would help him do a different procedure. He wants to work with a vascular surgeon to cut a small incision in his neck and move his carotid arteries over and pin them in place where they should be. After this is done, he would go in through his mouth and do the pharyngeal flap.
This scares me more than anything we've ever done. It's a huge decision. All his doctors are on board with it, though and want it done within the next couple weeks. We are meeting with the surgeon next Tuesday.
We have talked about holding off and doing it next year but looking at the pros and cons, we have figured out that doing it now will give him a whole year of intense speech therapy before kindergarten, the surgery wouldn't interfere with him starting kindergarten, we would increase the chances of him being healthy this winter because this will hopefully help his feeding issues as well, and he wont have to go another year with struggling with his speech. His speech therapist feels that if we wait a year his bad speech habits will continue and then be harder to fix in the long run.
So... give me strength please to get through this. I feel we are about to jump into something a little extreme and very scary and we will need all the prayers we can get. <3 p="">
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