Hearing loss..part II

L.,
Hang in there. This is really really difficult and I can only imagine how lonely it must feel to be in a new place and be home all day just letting your mind spin. I don't know that I have any helpful advice about your daughter's hearing loss, but I want to remind you that every time you talk to her, you are talking with more than your voice. You are talking with your eyes. You are talking with your body. She understands that. You sound so sad and I just want you to know that you really aren't alone. If you want to e-mail me, feel free. We could do coffee and talk or I could just lend a listening ear. I'm sure there are support groups etc also if you want to hang out with Mamas who are facing the same thing you are.
Stay strong. Take care of yourself and your daughter. Treasure the sweetness that exists in this heartbreak.
S.

Hey L.!

I'm glad to hear everything turned out good! What a big relief that must be!! Good luck on everything else with ENT and such. You might want to ask them how frequently an Audiologist will test her hearing just to keep an eye on it and make sure it remains stable at a mild hearing loss and doesn't worsen. Likely it won't if it's conductive and she doesn't experience any more ear infections, but, no harm in monitoring. Feel free to give me a holler if you have any more questions.

Good Luck!
M.

I would encourage you to get in contact with Minnesota Hands & Voices. They are a resource for families learning of their child's hearing loss and/or deafness. They can help you through the process (looking at all the various options) and connecting you with other parents who are going through the same thing. All the staff have a child(ren) with hearing loss or deafness. The coordinator, Candace, is a wonderful person. Their website is mnhandsandvoices.org.

It's never easy hearing that your child is not perfect in every way. I apologize since I did not read part 1. My daughter has failed every hearing test for 2 years, she does hear though. In her case there is just enough fluid in her ears to weigh down the cilia that the test monitors. There is always hope. But it isn't the end of the world if she cannot hear. I know a family that has 5 boys. 1 of the boys is deaf, he had a surgery that implanted a hearing device and he is as crazy as the other boys. Children are very resilient. She does not know anything different. This little boy is 4 years old and has been able to read lips for over a year. It's hard now, but it will get better.

We have good friends in mankato that have a son that was born deaf. He had the cochlear implant at 10 months, he is now 3 and is getting another implant on the other side. They did sign language with him and speach therapy after his implants. He is a normal, active toddler with normal speech. He's a great kid. He was an absolute angel when he was a baby and we all still talked to him as if he could hear. He would respond to facial expressions and what not. You don't want to really treat them any differently. You will find that you will come to meet many other families with hearing impaired children and have a good support group. You are lucky you are in the cities where there are so many resource and close to the U if you need to go that route. It's difficult for our friends in mankato that have to travel to the cities for appointments. Also be aware that the cochlear implant is very controversial in the deaf community. Many deaf people believe that by getting the implant you are wiping out deaf people. Anyway, you may not ever even need to consider this. Good luck with everything! You'll get through it, and definitely get out and meet some more moms!

L.,

I am sorry to hear about the test results. The technology that they now have for hearing loss is incredible and they can now do more then five years ago. There are some types of surgery depending on her type of loss that are available. Those services are available at U of M or Children's. Once you learn the type of loss I would ask plenty of questions and be aggressive of what types of alternatives there are options of.

My husband grew up complete loss in one ear and partial loss in the other. He is able to speak two languages, read lips and sign language.

You need to build a circle of friends. I would look at joining a playgroup that meets once or twice a week. I have found some of my best friends in playgroups that I have joined. Another suggestions is ask your doctor about support groups. You will meet other parents who are in the same situation that you are in and will be able to help and give you advice. Check out the link below for more information on support groups.

http://www.infanthearing.org/

-R.

My heart goes out to you. I don't have experience with a child that is deaf or hard of hearing but I want to strongly recommend visiting www.signingtime.com and to check out the baby signing time videos they have and the to read the story of how signing time was created. I love them as does my 9 month old daughter who we are teaching sign language to. I think everyone should know basic ASL. I hope this helps even in the slightest bit.

Hi L.,

My name is A.. I am a mom, but also a Deaf / Hard of Hearing educator. Okay... here is the process. If the ABR test shows that there is significant hearing loss the audiologist should refer you to two places. First to seek medical intervention and / or hearing aids(if needed) and then to the local school district. Your local school district will get a referral and contact you. There are all kinds of resources available depending on your needs. They will also have information about local resources (I couldn't tell by your post which city you live in) for teachers, parents that have children with hearing loss and all kinds of resources. I am actually teaching in a district that has over 45 students with hearing loss and they are all doing well with some support. My parents love to get together and use lots of resources. There are some great libraries and people that have lots of information.
But take things a step at a time.. don't panic until you have all the information you need. ABR tests are great.. there is no pain to the test and the audiologist can walk you through the process. Good luck!

L.,
Might I recommend joining our moms group? Its a GREAT group of women and children, the majority of them stay home with their kids and we do all sorts of activities.
I am not aware of anyone going through hearing loss with a child but we are all supportive, fun and understanding.
www.meetup.com (St. Paul stay at home moms group)
Hope to meet you sometime.

I wish I had more advice or insight for you. I can't really imagine how hard and scary that must be; we all want nothing but the best for our children, and anything that challenges that possibility is heartbreaking. I hope that you can get more answers soon and that you can get your daughter all the help she needs, so that no matter what, she can grow up to be a happy, healthy kid. My thoughts are with you and your family.

L.,

I visit babycenter a lot and find they have community groups on just about every topic related to babies. I searched the site for you and found one board just on hearing issues. I wish I knew of local resources but thought this forum might be helpful.

http://boards.babycenter.com/n/pfx/forum.aspx?webtag=bcus...#

A.

Please do go to this website for information about hearing loss. You can even ask questions about hearing loss with many, very caring, knowledgable people. One thing I know for sure is that the public schools now have SO much help available to hearing impaired children. I was not that lucky. My junior year is when Special Ed became available. Just make sure you keep the "eye contact" with her. For the hearing impaired, its all in the eyes and facial movements. NO sunglasses please. Good luck!
http://deafness.about.com/od/hearingbasic1/Hearing_Loss_B...

I just want to give you some hope.

1.
There is a commerical on tv about a family, it goes something like we had our first two children blah blah and then with our third she couldn't hear and blah blah they were the first family and the first child to have a pediatric cocinar(I can't spell that) transplant and now she can hear us. I believe it was with the U of M or something.

2.
My daughter's dad was partially deaf as a child, had major speech problems. They didn't find this out til he was probaly schoolage or close to. They did surgery in his ear, something was to big or blocking or something. He now has normal hearing, and has overcome any speech problems and is a successful adult with a awesome corporate job.

3.
There is a girl in my daughter's first grade classroom who has hearing aids and wires that run down the back of her shirt. My daughter plays with her and communicates with her just fine. She's in normal mainstream class and seems to fit right in.

I'm glad you listened to your mom instincts and had things checked out. Hopefully things will be ok, if she passed her newborn screening maybe it's just a small problem.And you've caught it early enough to intervene before she starts school and all of that. You could start signlanguage now regardless if your child will need to sign or not. I did signlanguage with my daughter at around that age and she picked up on it so fast, and she was so good at it. It helped alot with communication is she hungry? Does she want something?

I know my mommy instinct told me something wasn't right with my daughter and she ended up in physcial therapy and because I got on the ball with it early enough so we had corrected her problem before she started kindergarten and noone would ever guess anything was wrong with her.

Let us know what happens with her next appointment we'll be thinking of you guys.