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Need more prayers for Grayson, please.


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Grayson had an appointment last week with the pediatrician (well, nurse practitioner), and she asked how his appointment with the audiologist went. He had to have an appt for all his failed hearing tests he had in the hospital and at the ped office. He had an appt 2 weeks ago with the audiologist, but he detected fluid and said to clear the fluid first. The NP didn't like that response, so she sent me somewhere else yesterday. Children's ENT in Atlanta. They did an ABR test. It took almost 3 hours. I had to hold him the entire time, and the only way he would sit still for it was to breastfeed during the test. The tubes kept falling out of his ears because his canals are really small, and sometimes because he was stirring or moving.

 

After the test, the audiologist said he has mild loss in his right ear, and a more moderate loss in his left. Then, they repeated the OAE test that he has failed 5 or 6 times, and he passed???? Both the audiologist and the ENT basically gave me some pamphlets and want me to pick out a hearing aid.

 

 

But, get this...insurance does not cover hearing aids. We have VERY good insurance. They cover EVERYTHING, but don't cover hearing aids, and the audiologist told me that immediately after the test. She said it's extremely rare. But Medicaid does! I'm so furious. We are getting a second opinion on Friday, but I'm probably just in denial. I keep telling myself that he passed the OAE yesterday and that's a good sign since that is the reason he even got the ABR test yesterday is because he kept failing that. I keep saying that since he was eating and moving around that it must be wrong, but 2 other places I have called said the ABR is highly accurate, and so does all my Googling.

 

I'm so upset. I literally want to die right now. Every few years, if this diagnosis is true, we will have to buy new hearing aids at 2 grand a piece, and there seems to be no help for people who make too much money.

 

I just don't know what to do. I'm hoping and praying the test was wrong. The ENT did say, "Since we're getting conflicting information..." in regards to him passing the OAE...but neither really offered any plan to figure out why he may have hearing loss or what we could possibly do about it.

 

I know it's not the end of the world if this is how it is, but we don't have the money for $2,000 hearing aids. He needs one on the left ear now, and possibly on the right ear later. And I'm thinking ahead at how this will affect him. I just don't see how he will have a normal life because everything I'm reading keeps saying handicapped and disabled and learning disabilities and special needs and special classes and delays, and I really don't know how I'm going to handle this if this is true. The nurse practitioner made me another appt somewhere else for another opinion, but this was done right next to Children's, so they probably know what they are doing, and I'm probably just in denial.

 

The ENT did say that eventually he may not even need hearing aids, that it could get better, or could get worse or stay the same.

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I'm sorry. Everything will work out, though, so don't stress.

 

Look, my father was born deaf. He had 10% hearing in one ear, and 0% in the other. For years his family thought he "wasn't all there". they realized he was deaf when he came home and told his mother that the mute priest at his school had talked to him. He learned to read lips at a very early age. He has never had any mental/developmental problems. He wore a hearing aid since he was a child.

 

Several years ago he was approved for and got the Cochlear implant. He can hear almost perfectly now.

 

So, with that said, do not worry about what the future brings - development, special ed, etc., etc. There is no telling what the future holds, and chances are he will be fine otherwise.

 

Now, as far as the cost goes, I can totally understand your frustration with that. I believe there are organizations that help with the cost of them.

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I'm so sorry for little Grayson! Prayers to lift you as you go thru this! Thankfully, you are able to be there with him and ease this process. I know what you mean with hearing aid costs....My mom wears them and Medicare does not cover them either. We found out the hard way that she'd declined the "insurance" that the audiologist offered on the hearing aids when she broke one changing the battery (which is very very tiny) and they had to hit their savings again to pay for a new one. The only thing I can say is that the payment issues really do not reside with the insurance companies - we've got to address why the darn things cost so much in the first place!!!! Have you asked the audiologist if she knows of any groups - like Shriners or others that help with childrens needs - if they have anything in place to help defray the costs???? You'll handle it...you will - because you are his mother & you love him.

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I'm sorry. Everything will work out, though, so don't stress.

 

Look, my father was born deaf. He had 10% hearing in one ear, and 0% in the other. For years his family thought he "wasn't all there". they realized he was deaf when he came home and told his mother that the mute priest at his school had talked to him. He learned to read lips at a very early age. He has never had any mental/developmental problems. He wore a hearing aid since he was a child.

 

Several years ago he was approved for and got the Cochlear implant. He can hear almost perfectly now.

 

So, with that said, do not worry about what the future brings - development, special ed, etc., etc. There is no telling what the future holds, and chances are he will be fine otherwise.

 

Now, as far as the cost goes, I can totally understand your frustration with that. I believe there are organizations that help with the cost of them.

 

 

What she said.

 

 

Thinking of you. I am sure you are all worried.

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Cochlear implants are covered by insurance, but you can only get them if you have very severe loss. So Grayson wouldn't be eligible. I'm still holding out hope that this is all wrong and some terrible dream. I asked the audiologist what people do when they aren't on Medicaid, and she said there really isn't much out there to help other than the donor program that Oticon (one of the manufacturers) has to loan you one for 3 months. But you still have to pay for the ear molds. I'm just wondering...how many sets of ear molds am I going to have to buy at $150/piece since he is young and his ears are going to grow rapidly for a long time?

 

I'm just so upset. God, I hope this is all wrong. I mean...if they had done the OAE first yesterday, they never would have done the ABR...and he passed the OAE...the very thing he failed to make him need the ABR. I spoke with an audiologist in Dallas, TX who said she would definitely get another one just to be sure...and she thought it was weird he passed the OAE also right after "failing" the ABR.

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Here is a list I found of organizations that help those that do not have hearing aid insurance coverage and do not qualify for Medicaid: http://websites.afar.org/site/PageServer?pagename=IA_l_hear_10_help

 

 

Hope this helps :)

 

Thanks for the links. My MIL sent me some of those as well, and I guess I must just be too upset to look at them thoroughly, but I just thought we didn't qualify for any of it based on what I was reading. You have to be at 200% or below the federal poverty level, I think. For Lions, anyway. Maybe I'm wrong. I don't know.

 

I'm still hoping this is all wrong...

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Prayers for you and your family! I'm sure we can do some kinds of fundraisers to help you...heck we've help people with thier electric and gas bills....then they turn right around and have an island built for thier kitchen. :pardon:

 

Seriously....WE will find a way to help you and your family...that I'm sure of!!!

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If he was mine I wouldn't do anything. I would wait untill he gets a little older before doing anything. You as a mother can give him the best hearing test each day by watching him and talking to him and checking him with different noises. I don't believe half of what the doctors say. They are like mechanics each one will tell you something different except [John Boy] of course. The doctor told my sister when her baby was born that if she didn;t have all of her blood drawn out and replaced with a blood transfusion that she wouldn't live more than a week. My sister came home crying and mama told her to take the baby home and pray for it and forget it. That baby is now in her fourties married and doing fine.So you can't always listen to the doctors. I am not telling you what to do but I don't believe any test on a baby that young can tell how much they can hear. I think it is hogwash. Will be praying for little grayson but I don't think that you have anything to worry about.Ask God what to do .God Bless.

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I thought I could use the money I was supposed to get from my mom, but I can't. I can't get it yet...no telling when I can get it. There is a freeze on the accounts because she is getting divorced, so I can't get it out and can't use it. *sigh* Helpless. It just really makes me angry to think of all the kids and babies out there who have hearing loss and can't get their hearing aids.

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I don't think that you should wait, as language skills develop age 1-3. But, I do encourage you to reach out to some of the hearing impaired resources here and nationally and see if there is assistance. There usually is.

 

Start here: http://www.gachi.org/

 

Pcom can support you, but it's important to link with these communities. If you're child will be hearing impaired, I'd also look into some baby sign language just in case.

 

My prayers are with your family.

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My daughter has a bilateral mild hearing loss and wears hearing aids. Our insurance also doesn't cover the cost of hearing aids which I find just ridiculous. My first advice for you would for you to get your son in the Babies Can't Wait program. It's free and it provides early intervention for children with disablilities. My daughter started speech therapy when she was just 8 months old and continued till she turned three. They are very helpful and have wonderful speech pathologist. As far as the cost of the hearing aids, there a million grants available for babies that will totally pay for or significantly off set the cost of hearing aids. My audiologist actually applied for my daughters grant from the Alexander Grahman Bell Foundation and I was able to get her hearing aids which were over $4000 dollars for $1000. Some grants pay more depending on your financail situation. Also there are used hearing aids programs that are also great. Please feel free to contact me if you have any questions or just want to talk about it because I've been there.

Edited by gamom26
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My daughter has a bilateral mild hearing loss and wears hearing aids. Our insurance also doesn't cover the cost of hearing aids which I find just ridiculous. My first advice for you would for you to get your son in the Babies Can't Wait program. It's free and it provides early intervention for children with disablilities. My daughter started speech therapy when she was just 8 months old and continued till she turned three. They are very helpful and have wonderful speech pathologist. As far as the cost of the hearing aids, there a million grants available for babies that will totally pay for or significantly off set the cost of hearing aids. My audiologist actually applied for my daughters grant from the Alexander Grahman Bell Foundation and I was able to get her hearing aids which were over $4000 dollars for $1000. Some grants pay more depending on your financail situation. Also there are used hearing aids programs that are also great. Please feel free to contact me if you have any questions or just want to talk about it because I've been there.

 

 

She's right.... I am an Early Intervention Specialist & Special Instructor with Babies Can't Wait.... I'm sending you a pm.....

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My daughter has a bilateral mild hearing loss and wears hearing aids. Our insurance also doesn't cover the cost of hearing aids which I find just ridiculous. My first advice for you would for you to get your son in the Babies Can't Wait program. It's free and it provides early intervention for children with disablilities. My daughter started speech therapy when she was just 8 months old and continued till she turned three. They are very helpful and have wonderful speech pathologist. As far as the cost of the hearing aids, there a million grants available for babies that will totally pay for or significantly off set the cost of hearing aids. My audiologist actually applied for my daughters grant from the Alexander Grahman Bell Foundation and I was able to get her hearing aids which were over $4000 dollars for $1000. Some grants pay more depending on your financail situation. Also there are used hearing aids programs that are also great. Please feel free to contact me if you have any questions or just want to talk about it because I've been there.

 

Thanks for sharing your story!! I am going to send you a PM.

 

Grayson - and you - will be in my prayers. How old is Grayson???

 

He's 2 months. We are going tomorrow to another doctor, but they aren't doing any tests tomorrow...I don't think. I believe it is just a consultation, but we're on the road to another opinion, at least. But I really don't have the money for all these copays! Ugh.

 

Taylor's PALS, I will reply to your PM in a bit when I get a chance. Thanks!!

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Thank you...

 

I'm going to apply for help from United Health Care. They have a fund for children. They used to cover hearing aids for families who couldn't afford, but I see Listening in their exclusion list, so I'm not sure if they are still covering it. The audiologist emailed me the link to their application, so maybe they still do. They award a lifetime maximum of $7,500 per individual.

 

I'm still in denial, though, and I'm still getting the other opinion and more testing. I'm not just going to accept that he has hearing loss from one person. He passed the OAE yesterday, and that is what makes me think something else is going on. He has extremely tiny ear canals. They are almost closed looking. Perhaps he needs surgery to have those opened a bit. Maybe that is affecting his hearing. I don't know. Just trying to stay positive and not give in to this diagnosis yet. I read in a scholarly journal that ABR tests can be wrong 15% of the time...or were wrong in their study 15% of the time. So, I'm trying to keep hope. If he had failed the OAE yesterday, I would believe the diagnosis. But he passed for the first time, so maybe something has been going on but is getting better.

 

If he does need them and I can't get a grant, don't be surprised if you see me standing in a rich area somewhere with a bucket and a sign! It's important for him to get the aids ASAP if he needs it...and I can't pull money from nowhere.

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But I really don't have the money for all these copays!

 

Talk with each of the offices accounts department - not the receptionist. Explain how many doctors you are seeing. You may be surprised at the ones that will write off the copay. Hang in there. I hope you receive good news today!

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Talk with each of the offices accounts department - not the receptionist. Explain how many doctors you are seeing. You may be surprised at the ones that will write off the copay. Hang in there. I hope you receive good news today!

 

It is tomorrow, but thanks! I don't think they are doing any tests tomorrow, just talking with me. I hope he thinks it is worth doing another test. I have read that ABR's are usually repeated. That really makes me question why they did not suggest repeating the test at the Children's ENT.

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