Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 In a message dated 3/13/2000 10:06:38 AM Eastern Standard Time, mtrager@... writes: << The ABR did not go as we'd hoped however. We were sure that s hearing problems were due to all the fluid from infections, but the ABR said otherwise. >> What degree of hearing loss do your children have? Elaine PS: Don't rub it in about the King cake! I love it! Good thing I am on a diet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Sorry about the King Cake (the Jambalaya from Mother's was pretty good too!). Anyway, my 5 yr old daughter Toni is moderate to severe loss bilaterally, only diagnosed (properly) within the last few months. My 16 month old son is mild to moderate bilaterally, just diagnosed last week! We're reeling! Marc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Marc, Glad to hear that the surgery went well for your little guy. I can relate to the shock of having your two kids identified with hearing impairments at the same time. Our family went through the same shock in January with our two boys. Arty - 4 1/2 and - 3 1/2 who both have a mild hearing losses and are speech and language delayed. They both (possibily) have a progressive condition called otosclerosis which from what I am learning may be corrected by surgery, but doesn't go away. On Saturday, we have a consultation with our ENT to determine if we want to have exploratory surgery on one of the boys. We just aided our boys three weeks ago, and they are still in the process of adjusting. Unfortunately, we were in the same boat as you, insurance not covering costs, and 2 sets of aids to purchase. After networking with other local parents who had hearing impaired children, I located a local audiologist who came highly recommended and was willing to work with our family with the finances. We had to put down a $250 per pair deposit. And basically we are renting the aids from her office. We will be charged $40 per aid, a total of $160 a month that will then be applied to the balance owed. It is a great opportunity as we could not afford $7,000 for hearing aids. I also had gotten quotes from the two major hospitals in our area, and this audiologist's price was much more reasonable. One hospital wanted $4200 for one pair of aids, and we ended up getting the same aids for only $2750!!! So, price can vary from different offices. The aids my boys have are Phonak Piconet2 hearing aids. They are programmable and they each have their own remote control. They seem to be good for my boys, one thing I like about them, is that they have a safety lock on the battery door, so little fingers can not open it and take the battery out. The other feature they have is a guard over the volume control, so that little fingers can not change the volume level. I don't know if this is a feature only on this particular Phonak model, or if it is an option that can be added to whatever brand of hearing aid your family decides to go with. Luckily our audiologist works with lots of kids and had these features included, because when they were ordered I knew nothing about safety stuff like this. We went with the Phonak Piconet 2's because they came recommend by the audiologist that first diagnosised the boys, and by the audiologist we went to for the second opinion. So we felt comfortable with the choice since it was recommended twice. As for financing options, here are a few ideas. Our family makes too much money to apply for state funding programs. But I have had people tell me to apply anyways, wait for the rejection letter and then appeal. That said that with having 2 kids in the same boat, at the same time you might have to appeal a few times, but you might end up with something in the end. The same thing with the insurance company, especially if your ENT will help back you up with medically necessity letters. Right now, the boys hearing aid bills have been submitted to one of the local Jr. Women's League Societies in our community. A friend of mine is a member of the group and said that situations like our is exactly the type of opportunities they seek to help give financial assistance to. By the end of the month I will know if they are going to contribute any funding to the boy's situation. Having been through what you are going through it's not an easy thing to deal with, but this web site has been a blessing. I have gained more support, learned more information and I feel like I have a better handle on my boys situation because of all these wonderful people who are very supportive and helpful. Luckily, your kids situation has been diagnosised, especially very early for your little guy and now you know what your dealing with and can provide the proper care and services for them. Good luck, Sparks mtrager@... wrote: > From: mtrager@... > > > > Hey y'all! My stress-escape to Mardi Gras was much needed, and was > just the > ticket...temporarily! To all you folks on the list from Nawlins, the > King > Cake was scrumptious!!! Anyway, I arrived on Friday, and within an > hour of > sipping my first cocktail and dining on a crawfish po'boy, my cell > phone > rings and it is the lovely and talented Nicki, my bride of 10 years. > she > informs me that our 16 month old sons surgery to have his bad tubes > removed, new ones installed, and ABR test has been moved up a week. so > I > had to cut my trip short by a day, fly directly to Tampa, my wife has > to > arrange last minute flights for her and the two kids, pack, etc etc, > while > I'm in NOLA. (Yes, we had to go by plane to find someone who actually > cared > AND was competent at the same time! The Farrior Ear Clinic in > Tampa...highly recommended!!!) I was truly overcome with guilt, > anxiety... > and everything that goes with it. > > The surgery went well, they were able to retrieve the tube that fell > behind > s eardrum, and insert new ones. The ABR did not go as we'd > hoped > however. We were sure that s hearing problems were due to all > the > fluid from infections, but the ABR said otherwise. The doctor told us > he > will need hearing aids as well. Having still not figured out my > daughters > (5 yrs old) scenario with hearing aids etc, we were really caught off > guard, and are fairly depressed, confused, and generally in either > denial > or shock, I'm not sure which. > > So, that's where we're at. My daughter Toni had her first fitting for > aids > last Friday, but we're still undecided about which one to go > with...still > fighting with insurance companies and other funding avenues, and > trying to > figure out, " ok, we weren't sure how to pay for one set, how the hell > do we > pay for two? " > > I'm still reading through the piles of notes I've missed over the last > week > or so, and I'm getting there, but suffice it to say that it's good to > be > back in the loop again. Thanks again to all for the support, and have > a > great week! > > LET'S RADIATE! > Marc > Father of Toni, 5 (hi) and , 16 months (hi) > > > ----------------------------------------------------------------------- > > [ o n h e a l t h ] [ o n h e a l t h ] 3x + / wk 1-2x / wk 0-1x / wk > > ----------------------------------------------------------------------- > All messages posted to this list are private and confidential. Each > post is the intellectual property of the author and therefore subject > to copyright restrictions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Mark Here in Washington state there is a public agency called the Department of Developmental Disabilities. It is NOT an income based program, but rather based on the individuals disability. It is time consuming to apply, and we waited 6 months for an answer on whether Ashleigh would be accepted or not. But, it is definitely worth the effort! My thoughts and prayers are with you at this most stressful time....and no reason to feel guilty, I'm sure Nicki understands and is looking for her time at the mall! Karin mom to Ashleigh 8 1/2 profound loss Back from Mardi Gras! > From: mtrager@... > > > > Hey y'all! My stress-escape to Mardi Gras was much needed, and was just the > ticket...temporarily! To all you folks on the list from Nawlins, the King > Cake was scrumptious!!! Anyway, I arrived on Friday, and within an hour of > sipping my first cocktail and dining on a crawfish po'boy, my cell phone > rings and it is the lovely and talented Nicki, my bride of 10 years. she > informs me that our 16 month old sons surgery to have his bad tubes > removed, new ones installed, and ABR test has been moved up a week. so I > had to cut my trip short by a day, fly directly to Tampa, my wife has to > arrange last minute flights for her and the two kids, pack, etc etc, while > I'm in NOLA. (Yes, we had to go by plane to find someone who actually cared > AND was competent at the same time! The Farrior Ear Clinic in > Tampa...highly recommended!!!) I was truly overcome with guilt, anxiety... > and everything that goes with it. > > The surgery went well, they were able to retrieve the tube that fell behind > s eardrum, and insert new ones. The ABR did not go as we'd hoped > however. We were sure that s hearing problems were due to all the > fluid from infections, but the ABR said otherwise. The doctor told us he > will need hearing aids as well. Having still not figured out my daughters > (5 yrs old) scenario with hearing aids etc, we were really caught off > guard, and are fairly depressed, confused, and generally in either denial > or shock, I'm not sure which. > > So, that's where we're at. My daughter Toni had her first fitting for aids > last Friday, but we're still undecided about which one to go with...still > fighting with insurance companies and other funding avenues, and trying to > figure out, " ok, we weren't sure how to pay for one set, how the hell do we > pay for two? " > > I'm still reading through the piles of notes I've missed over the last week > or so, and I'm getting there, but suffice it to say that it's good to be > back in the loop again. Thanks again to all for the support, and have a > great week! > > LET'S RADIATE! > Marc > Father of Toni, 5 (hi) and , 16 months (hi) > > > > ------------------------------------------------------------------------ > DON'T HATE YOUR RATE! > Get a NextCard Visa, in 30 seconds! Get rates as low as > 0.0% Intro or 9.9% Fixed APR and no hidden fees. > Apply NOW! > http://click./1/2120/1/_/440511/_/952959709/ > ------------------------------------------------------------------------ > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 At 10:30 AM 3/13/00 -0500, you wrote: >From: mtrager@... > > > >Sorry about the King Cake (the Jambalaya from Mother's was pretty good >too!). >Ain't Mother's great???!!! Well worth the wait. Chris << Christofer deHahn.........Information Technology Manager >> << Chiliad Publishing.............Amherst, Massachusetts, USA >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 > Here in Washington state there is a public agency called the Department of > Developmental Disabilities. Thanks for the info . FYI, I believe it is a national program. Here is a website: http://www.acf.dhhs.gov/programs/add/ Does your daughter have any other qualifying conditions, or only deafness? According to what I read on their website, it was for people aged 5 or older. How old was Ashleigh? Hugs to all, Kay Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Kay I have spoken about this in the past on another list..But here goes Typically, deafness alone will not qualify a person. Here in Washington you there is not an age limit...anyone can apply. Ashleigh had her first assessment done 3 years ago and tested out with an IQ of 58, which is in the retarded range. Rob and I knew it wasn't accurate, as she had only been diagnosed and aided for less than 6 months. However, I figured I would use it to our advantage and applied for DDD funding, in hopes of financial aid with the co-pays, batteries, private tutoring etc. You are able to use the funds the way you see fit, with some limitations.. It has to be directly related to the disability. Unfortunately, they wanted an in person meeting, and after meeting/observing Ashleigh they disqualified her. As I said before it 6 months for the answer! I guess you can look at it two ways: 1) it sucks that I couldn't get the funding, but 2) it was nice to have a " professional " tell me the IQ test was wrong!! I have tapped into the DDD funding at work as well...if you remember I worked in a residential treatment center for psychiatrically impaired children. About 50% of my patients had DDD funding to access for respite care etc. I'll look in my information and see what I can find. I'll email it to you off list. May not be until this weekend....busy with the new job and all. Hugs back at ya, karin Re: Back from Mardi Gras! > > > > Here in Washington state there is a public agency called the Department of > > Developmental Disabilities. > > Thanks for the info . FYI, I believe it is a national program. Here is > a website: > http://www.acf.dhhs.gov/programs/add/ > > Does your daughter have any other qualifying conditions, or only deafness? > According to what I read on their website, it was for people aged 5 or > older. How old was Ashleigh? > > Hugs to all, > Kay > > > ------------------------------------------------------------------------ > GET A NEXTCARD VISA, in 30 seconds! Get rates as low as 0.0% > Intro or 9.9% Fixed APR and no hidden fees. Apply NOW! > http://click./1/937/1/_/440511/_/953012204/ > ------------------------------------------------------------------------ > > All messages posted to this list are private and confidential. Each post is the intellectual property of the author and therefore subject to copyright restrictions. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2000 Report Share Posted March 13, 2000 Marc, I also have two children that are hearing impaired. is now 7 and Holly is 6. I just wanted to share with you that although we where overwhelmed when it had happened twice, as I look at the girls lives I am so glad they have each other. They are the best of friends:) I was thinking back on when they where learning language...and it was really neat..they had a language all their own. Anyway...Our thoughts will be with you as you walk the beginning of this path. Ann Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 14, 2000 Report Share Posted March 14, 2000 At 07:47 AM 3/14/00 -0500, you wrote: >From: AVHear2@... > >Marc, > > I also have two children that are hearing impaired. is now 7 >and Holly is 6. Same here, 3.5, 9. Two kids, two deaf kids. They are best friends or mortal enemies at any given moment in time. They teach each other all the good things and all the nasty things alike. Chris << Christofer deHahn.........Information Technology Manager >> << Chiliad Publishing.............Amherst, Massachusetts, USA >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2000 Report Share Posted March 16, 2000 I feel for you. My daughter has mod-sev-bilateral too if you ever want to chat. Hang in there---they will be fine!!!! is 9 years old, mainstreamed & doing very well Quote Link to comment Share on other sites More sharing options...
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