I need help!

Janice - posted on 08/14/2009

My daughter has a mod/severe hearing loss as well. She's 21 months old and wears hearing aids...She may have a progressive loss which can be determained through genetic testing. Or you may live in a state that didn't do newborn hearing screening at the time of her birth. Your daughter is going to need hearing aids and it will depend on the state you live in and your insurance company to see if they're covered. To my knowledge H/A typically are not covered and catagorized as durable medical equipment. H/A can cost about 3 grand a pair. She may need a auditory verbal therepist (a specialist in dhoh children) to help promote her lestioning and speaking skills. She may also need to utilize a fm system in a classroom setting to help ease the backround noise due to the hearing aids amplifying EVERYTHING! All these services should be provided by the school district--Mind you they're pricey and you may need to fight to get "appropriate services" to meet your childs needs. You can message me if you need resources.

Wendy - posted on 08/06/2009

how is JJ doing now? My 11 yr old son was also in kindergarten before we knew he had a hearing loss (mild to moderate, wears bi-lateral hearing aids, flesh tone behind the ears but molds are green/blue/black swirls!) He also has normal ear structure, no ear infections (1st was a month after getting the hearing aids) and there isn't any family history of hearing loss at an early age. (my half brother had lots of infections and lost some hearing but not the same thing as my son)

Ronnie was great about the hearing aids. In fact he did a little presentation in his kindergarten call to show them all about them and how they could help him out. He repeated the proceedure in 1st grade just so that the new kids would know about the hearing aids and not ask over and over. Now he, when he sees someone looking at them (esp if it's a little kid) he tells the person all about them. It's funny how many times he gets asked why he has either erasers or gum in his ears! (by little kids). He likes the way he can educate more people about hearing loss. We treat him like it's just part of who he is and not a handicap. He's no different than another kid...just louder. (Are your hearing aids turned up? Do you have your ears on?) Oh, look out for the times when they get mad at you and mute them or turn them off. That was a real eye opener!

Kimberly - posted on 07/02/2009

Genista,



I hope the hearing aids work well for JJ. She is probably a very smart little girl. I imagine that she has been reading lips, that is how Caitlynn was getting by and why we didn't notice right away.

JJ may have nothing wrong with her ears at all. Caitlynn has normal ear structure, no numerous ear infections and no diseases, she just lost her hearing at 3.5. Even after her cochlear implant surgery the doctor found the ear structure completely normal. She has been activated for 5 weeks and it is amazing.

Just remember that little children are amazing and they can handle alot moe than we think they can. Good luck to you, your family and JJ

Genista - posted on 06/02/2009

Thank you guys all so much for your input, advise, and comfort!.. JJ was fitted on Monday for her hearing aids! we opted for PINK behind the ear with regular tubes (skinny wouldn't give her enough hearing.). we still have to wait 10 days before they are molded and ready to go but we already feel 100% better knowing that they are on the way! I cant wait to see the differences in her hearing! We have the most amazing Dr. We live near enough Salt lake City, Utah that we get the specialist from Primary Children's Hospital, which is amazing in and of itself!... he was so excited when JJ told him pink, he got on the phone for her right away to make sure that he could get them! I'm hoping all goes well from here on.. I'm sure we will have bumps here and there but nothing we cant handle!.. Delani, she has had maybe 1 or 2 ear infections up to this point.. we r still investigating the cause.. MRI's and such, hopefully with all the testing we should be able to determine some of the future for her... Thanks again everyone!!!

Elfia - posted on 06/01/2009

Hi, Mrs Heather Morgan..
We are Louis and Fia from Jakarta.. We would like to know about your daughter's progress in therapy and how is her speech and language comprehension today?

What kind of method (therapy) do you choose? Thank you..

Mr. Henri Lois & Mrs. Elfia Lois
Jakarta Indonesia

Elfia - posted on 06/01/2009

Hi, Mrs Genista Rifenbark, there is a bright opportunity for JJ...
My name is Henri Lois (Louis) from Jakarta, Indonesia...
I am an Auditory Verbal Practitioner (www.listen_up.org).. I had met so many hearing impaired children around the world and I have a good news for you: JJ can learn to listen and to talk..
Please kindly consider to visit any AUDITORY VERBAL Clinic around your neighborhood... The therapist will sit beside your JJ and guide you to help JJ..
Believe and keep praying for JJ...

Louis, Fia, Given (our baby boy, 9 months)
Jakarta Indonesia

Delani - posted on 05/31/2009

HI I am a mother of 5 children 2 of them are deaf, 4yr has severe to profound hearing loss and my 9m has profound hearing loss. they were both diagnosed at birth from the hospital. Did your daughter have cronic ear infections? that you know of?? If you don't know don't beat yourself up about, when my son was little he would wake up screaming but my 3 littlest girls you would have never known it. From the sound of it I think your daughter probably had hearing at birth to be able to speak. you may want to ask the specialist if this was degenterative.(this means it gets worse over time)You are going to have alot of info thrown at you very quickly from all the specialist. Take your time. You will not harm your child in taking your time. I know for my daughters they were trying to push CI(Chocular Implants), I am not saying that there is anything wrong with them but please, please talk to adults who have them and get there input also. Also remember that what whatever way you choose to go for your child that learning ASL would be greatly benificial, one of the guys who I talked to had a good point,he has CI now, hearing aides and ci break down, you need to have a back up plan. Let me know if I can help you in any way, have been going through this for 4 1/2 yrs now.

Kimberly - posted on 05/28/2009

My daughter was diagnosed in August of 08 with a severe/profound loss in her right ear and a profound loss in her left. I only caught her hearing loss b/c she wasn't saying any new words and her speech wasn't getting any better. The last word we can remember her saying was Samantha, her sister, who was born in April of 08. Sometime between then and August her hearing was gone. We don't know how she lost her hearing b/c the ear structure is normal, no fluid, no bone issues, nothing....so they say genetic.

She recieved hearing aids in November of 08. By 2009, the consensus was that they were not helping her enough. In Feb. of 09 she switched to an oral deaf school. She then started going through all the testing to be implanted with cochlear implants. She had her surgery on May 13th. A 6 hour surgery for her bilateral implants. She was just activated on Tues, May 26th....and can hear....she now can distinguish her dad's voice from mine.

I know that it makes no since why it happens....I did the research, I got as much information as I possibly could b/c I wanted to make sure that Caitlynn had what she needed. I didn't ask many questions at first b/c I was in shock...but we had a great audiologist and a great doctor who talked to us like parents and gave us all the information we needed. As she progressed I began asking more questions about everything. Just take a deep breath....this is something that has a solution and technology is great.

Heather - posted on 05/28/2009

Hi. My daughter is 7. She has a moderate/severe loss in the right ear and severe/profound lossin the left ear. She uses nvidia hearing aids and they are working amazingly. My daughter will never be able to speak clearly however. when I found out she lost her hearing, I was in total disbelief. I cried for several days but then I realized that I needed to be strong for my daughter and that everything does happen for a reason. After hearing from my audiologist, simply stating, your daughter will never get better and then he walked out of the room, it broke my heart. i couldnt understand how they could act like it was nothing but i left that audiologist and got a way better one. You just need to keep fighting for what you think is right. Noone else will fight harder for your child than you will. Stay positive and learn as much as you can. Specialists often assume you know what they are talking about, and if you are hearing like I am a have never dealt with it before,it can be overwhelming and you may not understand everything they are telling you. There are agencies out there that will help you at first to show you where to get info. Look for a community center for the deaf, they will help educate you will all you need to know. If you have any questions, I will hel;p with anything I know how. Email me at ladyphoenix610@yahoo.com. Good luck to you.

Mandy - posted on 05/22/2009

My son was 6 when he was diagnosed with moderate hearing loss. I am a teacher and didn't even pick it up so please don't be hard on yourself. My boy is fantastic at lip reading as was going so well at school so came as a huge surprise!!! He is 10 now and wears hearing aids. At the moment we are in the process of getting him an fm for class use to cut out some of that background noise. His teacher is also someone who roams around the class so it will make it easier for him to hear her (with the fm the teacher wears a mic around her neck so the sound is transferred directly to my son's aids). We have had a struggle getting my son to wear the aids all the time so he wears them at school and leaves them there (he lost 3 pair over 3 years - heaven knows where they ended up). As he has only moderate loss he copes quite well at home without them. At least I know he has them when he is learning in the classroom!!! Please talk to us on here as we have all had different struggles with all the issues that are probably going through your mind. Talking to others really does help, it is great that we have this sort of thing available now!!

Hayley - posted on 05/17/2009

My son was diagnosed with a moderate to severe hearing loss at 8 weeks old, he gets on really nicely with his hearing aids and you will be surprised with the difference you will see in your little girl if you decide to have them, I think from a parents perspective you have to get over the inital shock, we found out 23rd December so was an interesting christmas present and i was heart broken to be honest, 4 months down the line and i wouldn't have him any other way, it is part of who he is and the fact that we can choose coloured ear molds and pictures when he gets older, we're having great fun, of course he can choose when he gets abit older, my sons teacher of the deaf to me that she used to go and see one girl and she would use the hearing aids as an accessory which I think is a great idea, we want Toby (my son) to be proud of his hearing aids, you are very lucky though that your daughter does has speach Toby needs his hearing aids so he can learn to speak and hear us talk.



I'm sure JJ will do fine, try not to worry too much, she has been diagnosed now and can get the best care to help improve her hearing