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MomtoIsandEm

MomtoIsandEm

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Hi all...I'm Cara. I am a SAHM to my two daughters, Isabel who is 7 and Emma who is 3. Emma has a cochlear implant. She was implanted at 15 months old. Emma was born premature at 29 weeks and spent the first six months of her life in the hospital. We believe that the very high jaundice that she had for at least 4 months and the very strong antibiotics she was given caused her hearing loss becuase she did hear at birth. She has auditory Neuropathy. When Emma finally got out of the hospital ,she was fitted with hearing aids and wore them until her surgery. She unfortunatley heard nothing with hearing aids and was implanted in November 2004. Emma is doing wonderful and loves her "bamp" as she calls it...it's the first thing she asks for in the morning and we have to let her fall asleep before we take it off at night because she doesn't want to take it off. She's talking up a storm right now and is a happy little three year old. She goes to pre-school and takes ballet and tap classes. We are in the process of trying to get a bi-lateral since April of this year and are having lots of problems with our insurance company. Emma had the Sprint processor and last Wednesday was mapped for her new Freedom BTE..glad we held out until now for the BTE because we were able to get the new technology. We are having some problems keeping this one on her ear so all suggestions welcome for that! I look forward to getting to know some of you.
 
Welcome Cara! It's good to see more parents joining up here. Emma sounds very sweet :)
 
Hi, Cara! I am glad to see another parent!

My daughter is 15 months old. Her deafness is caused by the Connexin 26 genetic marker. My husband and I didn't know we were carriers. She also got little benefit from HAs, so we had her CI surgery on Sept. 25. Right ear only.

She was "hooked up" on October 20 and we are already seeing such a difference.

It is exciting to hear that Emma is taking ballet and tap classes! And I love that you have to take the stuff off after she goes to sleep. So sweet!

I have been in the middle of a huge dilemma trying to figure out how to have Erin wear the BTE.

Right now, we have two small hair bands wrapped around the BTE controller with a long safety pin run through it. Then we pin it to her shirt. Here is a pic:

IMG_2904.jpg


You can also see more of an explanation at Erin's blog...

Erin Toes is getting a cochlear implant.

If your sewing skills are better than mine... take a look at the blog Cloggy made for his daughter. They have crafted a nifty cloth pouch that they pin to the back of her shirts. That may work better for an older child than my rig does.

He has been a huge help to me. He has posted very detailed photos of the pouches on the blog.

Lotte Sofie
 
Welcome on here! Glad to see you, Cara (may I ask what a SAHM stands for?)

(momtotoes = Her deafness is caused by the Connexin 26 genetic marker. -- that is the cause of deafness in our family -- Cara in case you may not know, I am 1st generation deaf of 3 generations and my grandson got implanted at the end of July of this year)
 
Welcome Cara!

My story is very similiar to Momtotoes, except my daughter is 9 months old and is not implanted yet. We are in the process of testing to see if she is a candidate... there should be no reason she isn't. She has a profound hearing loss and is getting very little from hearing aids.

Good luck with getting answers! Everyone is so helpful here, and they have great suggestions.
 
Thanks everyone for your responses and welcomes. SAHM stands for stay at home Mom..sorry! Momtotoes...that looks like a way we could try...problem is I have to order a longer coil..right now I have two of the shortest ones...I didn't even think I would need the longer one...not totally realizing the freedom's coil and the Sprint's are different. I had to take the MicLoc off because it was leaving a mark behind her ear and she kept saying owww mommy.... right now we're just using a gator clip to keep it attached to her but it's falling off alot and I don't want her to have to go back to the Sprint...she's just so active now and it's harder to jump around like a ballerina with a fannie pack bumping around!!! At least Emma knows when her battery runs out..because this one doesn't beep to warn me!
 
Fisrt, WELCOME! As said above, I too am very happy to see more parents. Lilly is 2 1/2 and was implanted at 1 1/2. She is a conexin 26 kido. We also did not knwo we were carriers until Lilly had her CI surgery.
Have you tried the "Huggy" to keep the earpeice on the ear? Lilly is still using the Body worn set up, and we use the huggy with good resluts.
As far as the bilateral fight goes, DO NOT GIVE UP!!! We fought long and hard until we got our way (so far). Our insurance refused to cover it. We fought and fought through appeal after appeal. My work changed Ins co. the co we now have (in dec) have said they will cover the surgery and equipment. There are several resources you can use to get help. Try a group called Letthemhear.org. They are a group that only does one thing. They fight to get kids implanted. Both unilateral and bilateral. They are based in CA, but they can take cases in any state in the country. They can also give you advice on how to fight the fight. Here is one thing AI learned from them. Were you aware that, when you look at your ins policy and is says that CI are "excluded" or "not covered" by the policy, violates several federal laws?
Keep fighting and never give up.
Once again, welcome!:wave:
 
Welcome!

Hello Cara!
I am a stay at home mom to Isaac who is 19 months old and I just found out I am pregnant again (due June 1, 2007). Isaac was implanted on September 25 (the same day as momtotoes daughter Erin). We are in the beginning of our journey with the CI. Yesterday Isaac went for his 2nd map and the audiologist let us trade in one of our shorter coils to try a longer one. She said if we don't like it we can trade it back. I was going to see how much it would be to purchase one from Cochlear's web store....they are $290.00! So I asked our audiologist and she let us try it out. You may want to do that to save yourself some money. Also, maybe ask your implant center if they have any pouches for the BTE. Our audiologist gave us a pouch yesterday that was made by the Cochlear Corp. specifically for the BTE. I can't seem to post a pic of it here because I can't seem to get the image small enough for this site to allow it, so I am going to post it on Isaac's blog. We are trying out a lot of different ways to wear the CI. I'm not sure which one we like best yet. Good luck! You can check out Isaac's blog if you get a chance...
Isaac's World
 
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