brace update

Corinne has been a trooper with her brace but defiantly doesn't like it. About a week and half ago she wore it through the night for the first time. I was away on a womens retreat so she got to sleep with daddy while wearing the brace through the night for the first time. She will moan during the night and some mornings she wakes up acting really uncomfortable/sore. We went to the orthopedic yesteday to do x-rays to make sure the brace was pushing on her spine in the right way. It was so we don't have to make an adjustments. The doctor also said she will probably need a new brace in a year. I know this makes sense because of growth but it hadn't hit me. The brace cost $2400 and it was all out of pocket. So now that will be $2400 every year. I know there is alot of discussion about healthcare reform, ect, ect. But having a medically needy child who comes from a country with no healthcare coverage my perspective has been influenced to say the least. I know that there are alot of things wrong with the new bill but I personally feel that there is a moral obligation to provide healthcare to people. Now what that looks like is a whole 'nother bag of worms. I can only speak to our experiences. We have an individual policy (no coverage through my husbands work). Every year our premiums go up up up and our deductible for our daughter gets higher. Sure the insurance company can't boot her off the plan but they can nickel and dime us. Right now her decuctible is $5000. As you know she wears hearing aids which requires hearing tests every 4-6months, new ear molds ($150 pop), repairs, ect. Guess how much insurance covers - Nada - not one stinking thing! They didn't even cover the hearing aids - another $4500. In the great state of Tennessee this is no mandatory coverage for children with hearing loss. So since it isn't mandated it won't happen. Insurance will pay for 20 visits for speech therapy and we had to go through a "special process" just for that. Everyone knows to speak you have to hear so if you haven't been hearing you can't speak - well at least I thought most people knew that. So she has been in speech therapy for almost 3 years 1 time a week - cost $150 a visit. Like I said BCBS covered the first 20 visits then it was up to us. Corinne didn't have just an "r" problem or stutter problem. (she had 2 medical problems contributing to her issues) She had major speech delays. Now that her speech has improved alot we have moved her therapy out of the Vandy system and closer to home which also brings the cost way down - $60. As I was racking my brain today thinking what do we do it hit me "Shriners". I didn't know much about them but now I do. I called a nice lady today in Lexington and she said they would be happy to help our family and meet Corinne's healthcare needs. I asked her "but do we qualify, what income level do you help, ect, ect." She said as long as the child is under 18 and has a medical condition that falls under their speciality then they will see us. Preadolsecent scoliosis falls under their umbrella so we meet the criteria. It is that simple. What ever insurance won't cover Shriners will cover the rest! Isn't that amazing. And such a relief. I also feel like an idiot for not knowing what a wonderful thing Shriners is.
Anyways a little food for thought as the topic of healthcare reform is mentioned

Scoliosis

Corinne was diagnosed with scoliosis 18 months ago. She has been followed by the orthopedic every 6 months. Her last x-ray revealed that her curvature had reached a point that she needed to start being braced. Currently her curve is at 30 degrees. This week she and I went to pick up her new brace. Corinne is usually a very compliant patient. It is not that she wasn't compliant at her brace visit but she "knew". She knew this brace was "stinky". And let me tell you it is stinky! The doctor wants her to build up to wearing it 16 hours in a 24 hour time period. Initially they say let her wear it for a few hours at a time and adding an hour. We came home and I put it on her. I didn't let her see me cry. I went in the bathroom and sat and just cried. It was a pitiful sight to see her in the brace. I had put it on and put a t-shirt over it. She looked totally disfigured. They had added extra padding to the brace near her shoulder blade. It makes it look like she has a hump on her back. She can not walk nor stand normal in the brace. My prayer is that she can learn to sleep in the brace. Some kids can. If she can put it on in the afternoon and wear it till morning we can get the 16 hours in. I will not make her wear it to preschool - that would be sooo unfair.

Yesterday I just sat and thought "why god". Why does this sweet baby girl have to endure something else "broken" in her body. Isn't that the famous question most of ask when we see suffering. The only answer that makes sense to me is this. In my childrens story book bible it says "when sin entered the world the world broke" It goes on to say creation would start to unravel, and come undone, and go wrong. That is the answer to the why question. That seems so simple. Makes you think "thats it", but that is how awful sin is. And if that is how awful sin is then God must be so unbelievably incomprehensibly Holy.

If you are reading this then I want you to ask yourself something. Is there a child, a medically needy child, we can adopt or help care for? These orphans need families. If Corinne had not been adopted she would of never been treated for hearing loss, never had her palate(vpi) surgery, never learn to speak clearly, never have her heart valve replaced, never treated for scoliosis. So where would that have left her? Maybe she would die because her leaky valve would damage her already enlarged right ventricle so much that it would give out. Or Maybe she would eventually look like this.


She most defianlty wouldn't of received hearing aids in China - so what sounds she would of never heard. Maybe her caretakers would of considered her slow or mentally impaired due to poor speech. I don't know but the important thing is that is not her future. She has a future because of adoption. Instead she looks like this (singing Ariel theme song while dancing with her brother decked out in her dance costume)


I am not trying to put my family on a pedestal and say look at the wonderful thing we did. No not at all. I use to be scared of Corinne's medical report, but God changed all that. He has replaced my heart of stone with a heart of love for special needs orphans. I don't know what God's plan is for Corinne's life. What I do know is our family gets the privilege of watching her grow up and see her grow into the beautiful woman God has created her to be. She is special but not because of her medical report.
There are sooooo many kids like Corinne who need a mom and dad that need medical help. Won't you consider bringing one into your family?