New here

Michelle - posted on 05/10/2009

I'm new on here too and have a 14month old boy who wears hearing aids. He was picked up with the newborn screening and diagnosed with a mild to moderate bilateral hearing loss, He has been wearing hearing aids since he was 2 months old. We are so thankful that he had the newbron screening as we had no idea he had a loss (in hospital he startled when y husband sneezed and a door slammed). He does hear us without the aids but obviusly not completely. We were told that if we hadn't had the newborn screening done his loss wouldn't have been picked up until at least 18 months - 3 years as he would have had huge language delays. We have a daughter who just turned 5 and was tested straight away and fortunately has no hearing loss.



I am also grateful to be in Australia for the financial side of it, we were told that the hearing aids would be supplied until he's 21 years. We pay just under $30 a year to cover batteries etc I suppose.



We attend a speech and hearing centre and I go fortnightly to the playgrooup and weekly to an individual therapy centre. The staff are wonderful and everyone is so supportive.



It was upsetting to begin with but now the hardest parts are the drives and trying to keep his aids in (yes he likes to pull them out).



Anyway good luck to all of you.

Tracy - posted on 04/27/2009

Yeah my neighbor is a high school teacher and they actually give them microphones to wear if they choose. And one of the girls in another classromm wears aids so they had the microphone set according to her aids so that was cool!! The lady that has itt says they'll be in seperate cars and she'll tell her son to ask the dad something while they're driving, LOL.



Well my oldest son has taught the other kids everything just about! LOL. He gets books and reads them and I had a book from when he was small with first words and pictures and he get that book and sits down with them and tells them to pay attention and he teaches them, he says nope say it like this..a-i-r-p-l-a-n-e. Hell he was teaching the 3 y/o to subtract at the dinner table last night!! He is super fantastic with them. He sounds so much like a little professor..I think he just likes it b/c they are listening to him and doing what he says, LOL.



That's one of the things I'm most looking forward to is just seeing her face when she hears noises she has never heard before. And the parent that comes and talks with us she said you just have to adjust and pay attention to things you've never had to..like the dishwasher and things like that..background noises that doesn't bother us may bother her to start with. And we kind of yell ay her, not yell but you know talk loudly, so it's gonna be quite the adjustment to realize that we won't have to do that anymore! I'm so ready!

Mandy - posted on 04/27/2009

We are really looking forward to getting the fm system. Keenan is doing exceptionally well at school, but has some gaps in his learning which I think he has just missed because he hasn't heard what the teacher has said. He has a wonderful teacher this year and she is conscious of Keenan's loss but she teaches as she walks around the room (not good if Keenan is trying to hear and lip read!!!!). The fm will enable him to have a lot of that background noise reduced, and allow him to hear the teacher wherever she is in the room.



It must be sooooo exciting for your other children to teach your little one the magic of language!! I remember when Keenan got his aids he was up one end of the house and the Simpsons came on the tv. He was thrilled that he could hear it from the other room. The amazed look on his face was fantastic. We really hadn't realised how bad his hearing was because his speech and academic progress at school had been great. The little monkey is a wizz at lip reading though.



Looking forward to hearing how your little girl gets on with her aids!!!

Tracy - posted on 04/27/2009

One of the parents that visits our home has the fm system. She says it's really cool!! I am very thankful for the financial assisstance we are receiving and they can get it until they're 21, so I have many years not to worry.



I just have to have a great attitude for the reason you said....it's moderate hearing loss that can't be fixed BUT it can be helped!! And there are SO many others out their suffering ALOT worse than she is. She's bright and healthy and I'm so very thankful!



I know in just a few more months I'll be able to hear her sweet little voice. THEN she'll probably cuss all the other kids out for everything they've ever done to her!! LOL! My 3 y/o is super excited..she says "When she gets her hearing aids she'll be able to talk like us, right mommy?" And my son has been trying to teach her things and you knw she can't talk so he says he can't wait b/c "there's so much that she needs to learn!!" The kids are really great about it. Although they don't fully understand, we as a family just deal with it and take it in stride!

Mandy - posted on 04/27/2009

It is great to see people with such a wonderful attitude to your children's hearing loss. My son is almost 10 (May 9th) and has moderate hearing loss in both ears. I think you just deal with it and do your best to help your child in any way possible. Keenan (my son) has had aids for about 4yrs. He has some other major health issues and we attend the hospital very regularly. Seeing many of the children there make you so thankful that your child is as healthy as they are, there are many more that are worse off than our family is.



We must be so lucky here in Australia. We pay less than $30 a year and have no other costs associated with getting hearing aids (though when he turns 18 the costs are through the roof!!!). It must be hard to have to spend a lot of money just getting your child a vital piece of equipment. Keenan is about to get an fm system (at no additional cost to us).



Kind regards,

Mandy

Tracy - posted on 04/22/2009

I am so happy as well to have that support out there. Alot of people say "I thought I was the only one" but you never are and never will be..there seems to be support for everything so noone is ever alone in their experiences!! After her sedated ABR I'm assuming we'll know her loss level...which her right ear is worse than her left (or vice versa)..by her botth test and ABR that didn't work was like 40 decibals (?) so that's right on the border od mild to moderate. And then her genetic test. I'm really interested in finding out what caused it although I know that that may not happen but still I'm curious.



Yeah we weren't devastaed at the news, it is what it is. And I have to be positive about it ya know? My kids only have us around and I can't go being all depressed b/c one of them has a hearing loss when they need my support and love SO we kept our heads up and are going to do all we can!!



Looking forward to keeping in touch!

Kimberly - posted on 04/21/2009

Hi Tracy....My daughter is 4 (will be 5 in August). She lost her hearing around 3.5 and wasn't diagnosed till she was 4 (August of '08). She currently wears hearing aids, it took her 4 months to get her own aids, b/c of financial assistance also. She had a pair of loaner aids after just 2 months. We were like you...we weren't devestated at the news, we knew something was wrong....we weren't quite ready for how bad her loss really was...she has a profound loss in her left and a severe/profound loss in her right. She is in an Oral Deaf program in our city and they focus on teaching how to listen and speak to communicate. She will be getting cochlear implants in May. It's a whole new step for us and I love finding other parents in the same situation to talk about the highs and even the lows of having a child with a hearing impairment.

Tracy - posted on 04/18/2009

SO they finally found a doctor who accepts CRS and does the sedated ABR test!! YIPPIE!! We go for the consultation the first of May and then they'll schedule the sedated ABR and then it'll be hearing aids time!!! I'm nervous and excited all in one. I am just so excited that she'll be able to hear correctly soon and then she'll be able to talk!!

Tracy - posted on 04/09/2009

Thanks!! To my understanding they have to get their ear molds like every 3 months while they're young....is that right?

Portia - posted on 04/09/2009

Welcome! I'm pretty new too :) my son is profoundly deaf and he is 2 1/2 yrs old. If you have any questions along the road please fell free to ask.

Tracy - posted on 03/30/2009

Oh then you're not far away then. Now the funding we are going to receive is thru CRS, do they have that in NC? It's through the health dept here so I'm assuming NC should have it also. We started with BabyNet as well, they got to the age of 3 and I think CRS is 21. I'm just thankful that they have funding for it. It is very expensive and we would never be able to afford it otherwise, especially getting fitted for ear molds every 3 months until she's older..goodness!!

How did you catch it so early with her? Another parent I know has 2 children with aids...her oldest and her youngest. With her oldest, he got them around 2 or 3 and they had the genetic test done so with the other 2 boys they just had them tested and their youngest had it also so he got his at 8 weeks also.We're having Rileigh's genetic test done in May and depending on what comes of that we'll have Tyler tested..the older 2 are fine so I just wanted to have my youngest tested to avoid all of this.

Stretched doesn't even begin to explain it, LOL.

Randi - posted on 03/29/2009

We live in Gastonia we have a great audiologist she is so helpful with getting us help. We recently had to turn up Addison's hearing aids and now they are at there limit and we are trying to het funding for new ones! She'll catch up don't worry! if you need to talk I def understand what your going thru I also have a 2 year old so I know how stretched you can feel

Tracy - posted on 03/28/2009

HI. What part of NC? We live in Fort Mill, SC like 10 miles from Carowinds. We lived in Charlotte from 2000-2005 then we moved to Fort Mill for the schools and just to get out of the city. Anyway, we're waiting on the approval letter for CRS (Children's Rehabilitation Services) and I have to fill out a medicaid app too for that as well. We are also looking for someone who does the sedated ABR test and who accepts CRS and United HealthCare (that our ins) PLUS looking for a pediatric audiologist.

The thing with being in SC is that although we are so close to Charlotte, they are NC so they don't really help out with SC as far as with accepting CRS and things so we'll end up having to go to Columbia. But that's only like an hour away so that's not too bad.

It's just overwhelming right now with a 3 week old as well BUT we will survive and get it done. And trust me I'm definitely not giving up on the verbal...she can say some things, probably not for anyone else to understand but we do, ya know? She can "say" eat, snack, ,night-night cup in her own little way. She can also follow directions..."no", "go get your cup", "let's go bye-bye", little things like that. So I really think she's gonna catch on really quickly once the speech theraphy starts.

Randi - posted on 03/27/2009

My almost 4 year old has worn aids since 8 weeks old. what state do you live in? We live in NC and we get tons of help!  Don't give up on verbal she will start soon!!!

Tracy - posted on 03/16/2009

Thank you so much. Yeah the only appointment we've had to reschedule was the financial people and it killed me to do that!! We are so going to be on top of her appts once they start coming up. I mean stuff happens and comes up that we can't help but we plan on doing everything to the best of our ability to get things going for her. I cannot wait, I'm so excited just to know that I'll be hearing her little voice soon AND that she'll be able to hear us.

Michelle - posted on 03/15/2009

best of luck and now you really have your hands full!! try to be on top of his appts. tho.  I only say this coz i've heard horror stories about missing and canceling appts.  Some places see it as they don't care for their child if they always have to cancel or reschedule and i'm not saying that is you at all, i just heard other stories from other parents that have  gone to the place that i'm going to and i'm not gonna disclose the place but i can actually understand that every appt. counts for your child, the sooner you get things going, the better it is for your child to hear at his or her full potential!!  God bless your growing family! =)

Tracy - posted on 03/14/2009

She said 3 months to give us a ballpark estimate. She has to have her ABR done, she has to see and ENT and then she said it takes like a month to get the aids...I don't know how accurate she is but that;s just what she said. And too we had an appoinment but we had to cancel it b/c I had our 4th child...he just came and interrupted things, hahahaha. But we're gonna get there.

Tracy - posted on 03/14/2009

Wow to catch it at 3 months is great. Frustrating but great. She has moderate bilateral loss. We go Wednesday to fill out the paper work for the financial side of it. And we have a parent who comes to the house every two weeks to work with her and us giving us different things we can do to help her. She's bringing the sign language book next week so I can't wait to teach her some signs.

Michelle - posted on 03/03/2009

Welcome Tracy.  I'm glad you're keeping a positive outlook!  Do you know why it's taking 3 months to get your aids?  I only ask because they almost wanted me to wait 2-3 months but I wasn't having it.   The sooner you have the aids on your daughter, the sooner they can be stimulated with noise.  I stayed on top of my son's appointments and hearing aids status etc.  I would call to ask how long it would take to get the aids and the such.  To see if you can get it sooner.  You ARE totally blessed to have a sweet baby being watched over by God.  Let me know how everything is going!

Clarissa - posted on 03/03/2009

I'm new to this too and it's so helpful to meet others and to be surrounded by those who truely understand!!!!! My son is 5 months old and has profound bilateral loss....he got his first HA's when he was 3 months old and we haven't noticed any benefit yet. We are working with AEA and I'm learning signed English. We have chosen for him to be as verbal as possbile and are working towards cochlear implants. He has had 4 ABR's since he was born and are still uncertain of the cause. We are going throgh gentic testing and have two other hearing children. Other than his hearing loss he is a normal healthy little guy! It is very hard sometimes to think that he can't hear us when we sing and talk to him, but find reassurance in his smiles and coos. He is VERY visual and good at tracking supporting that sign will ease the communication barrier as he grows. We are thankful that it was caught so early and that there is so much support! What a blessing to find others who are going through it too and that we can find comfort in eachother!