Friday, April 23, 2010
Hearts for Hearing
We have our appointment at Hearts for Hearing in OKC one week from today. We will take the ear molds (pink and purple swirls with sparkles) the Health Dept. had made for us and be able to have her fitted for aids that day. She and her daddy went and picked up the molds this morning and she likes them so that is one step. She wanted to hold them in the car and that is great. The sooner she takes ownership the easier my life will be.
Tuesday, April 20, 2010
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More Hearing Information
So far this blog has been nothing more than a vehicle to share pictures of my family with far away family and friends. I still want it to be that but now I feel like I have a story to tell that may some day help another mother or father find their way through the hoards of information out there on hearing loss.
Before I go into what happens next I just want to say this is really hard. I have a friend whose boy has high functioning autism. She always has a smile on her face and stays positive in my presence. Never before was I able to relate to her pain or agony over having a child that will be faced with a challenge for the rest of his life. I now know there are probably nights she cries herself to sleep and days where the tears sit right behind her eyes but hopefully stay there unless she is alone in the car. On the other hand, the face she puts on for me is the face that gets him and her through the day. What else is she supposed to do? Sit and cry about it. And I now know, as she has learned, sitting and crying doesn’t do anyone any good (although there are some days it is allowed and sure feels good).
In the same breath I know what is wrong Georgia is fixable. It is not cancer or meningitis or autism. It is as fixable as crooked teeth or bad eyesight. While these fixes are a little more mainstream, they probably feel bad at times to the kids dealing with them. So my goal is to stay positive but allow myself moments of weakness as any mom would. I am so blessed to have in-laws that, believe it or not, dispense hearing aids for a living. I am blessed to have the amazing support of my parents and siblings and all my in-laws and to have a job that allows me to take the time(and phone calls) to deal with this issue.
Now this is where I may lose some of you but journaling my encounters with the professionals helping me along the way is part of working out what I am doing in my head. I contacted a wonderful woman today in OKC who is with Hearts for Hearing and learned so much. As of yesterday we were looking at some major out of pocket expenses (including some aid from a grant funded program) because insurance does not cover anything to do with hearing loss or genetic testing. Today I found out if we go to OKC they will give us our first pair of hearing aids for free and significantly reduce what we thought we were going to have to pay for genetic testing. The genetic test looks at Conexin 26 which you can follow the link to read more about if you are interested. There are two reasons for the test. One is to further investigate if the hearing loss is progressive and the other is to let us know how closely we have to watch the new baby. If not for these two factors, I would not care what the cause of her hearing loss was.
The other exciting information out there is that Tulsa Public Schools has some wonderful services for the deaf and HOH (hard of hearing). They will provide you with free ear molds every six months (because young children grow so fast) which would otherwise cost $100 a pop. They have an audiologist on staff and we can have G’s hearing tested for free whenever we want, and they have an individual who keeps an eye on G’s progress to make sure she is getting the help she needs an doesn’t fall behind. When we first found out about this I told Matt I was now considering home schooling but after more thought and all the services TPS offers, I think public school is still right for us. They also provide a free FM system which is awesome and you can follow that link to find out more as well.
This is just the tip of the iceberg as far as people I have talked to and things I have learned in three short weeks but I am excited about the information I have and am ready to improve my baby girls quality of life as soon as I can.
Before I go into what happens next I just want to say this is really hard. I have a friend whose boy has high functioning autism. She always has a smile on her face and stays positive in my presence. Never before was I able to relate to her pain or agony over having a child that will be faced with a challenge for the rest of his life. I now know there are probably nights she cries herself to sleep and days where the tears sit right behind her eyes but hopefully stay there unless she is alone in the car. On the other hand, the face she puts on for me is the face that gets him and her through the day. What else is she supposed to do? Sit and cry about it. And I now know, as she has learned, sitting and crying doesn’t do anyone any good (although there are some days it is allowed and sure feels good).
In the same breath I know what is wrong Georgia is fixable. It is not cancer or meningitis or autism. It is as fixable as crooked teeth or bad eyesight. While these fixes are a little more mainstream, they probably feel bad at times to the kids dealing with them. So my goal is to stay positive but allow myself moments of weakness as any mom would. I am so blessed to have in-laws that, believe it or not, dispense hearing aids for a living. I am blessed to have the amazing support of my parents and siblings and all my in-laws and to have a job that allows me to take the time(and phone calls) to deal with this issue.
Now this is where I may lose some of you but journaling my encounters with the professionals helping me along the way is part of working out what I am doing in my head. I contacted a wonderful woman today in OKC who is with Hearts for Hearing and learned so much. As of yesterday we were looking at some major out of pocket expenses (including some aid from a grant funded program) because insurance does not cover anything to do with hearing loss or genetic testing. Today I found out if we go to OKC they will give us our first pair of hearing aids for free and significantly reduce what we thought we were going to have to pay for genetic testing. The genetic test looks at Conexin 26 which you can follow the link to read more about if you are interested. There are two reasons for the test. One is to further investigate if the hearing loss is progressive and the other is to let us know how closely we have to watch the new baby. If not for these two factors, I would not care what the cause of her hearing loss was.
The other exciting information out there is that Tulsa Public Schools has some wonderful services for the deaf and HOH (hard of hearing). They will provide you with free ear molds every six months (because young children grow so fast) which would otherwise cost $100 a pop. They have an audiologist on staff and we can have G’s hearing tested for free whenever we want, and they have an individual who keeps an eye on G’s progress to make sure she is getting the help she needs an doesn’t fall behind. When we first found out about this I told Matt I was now considering home schooling but after more thought and all the services TPS offers, I think public school is still right for us. They also provide a free FM system which is awesome and you can follow that link to find out more as well.
This is just the tip of the iceberg as far as people I have talked to and things I have learned in three short weeks but I am excited about the information I have and am ready to improve my baby girls quality of life as soon as I can.
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