Any parents who have children with hearing loss

Discussion in 'Special Needs Support' started by horseybird, Jun 2, 2015.

  1. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    :hugs: I remember implantation day as if it were yesterday (it was over 3 years ago!) Huge hugs. Definitely a lot of work ahead, but worth it .
     
  2. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Thank you so much, ladies!!! We are home now, and he's in some pain, but he's being so tough. He's slouched down in the recliner playing Minecraft right now. ; )

    His activation day is just under two weeks away. I know it will be very different, and a lot of work, but I'm so excited for him to get started. : )
     
  3. deafgal01

    deafgal01 LTTTC #1

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    Keep us posted - we definitely love hearing updates on how everyone's doing!
     
  4. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Denny is healing REALLY well from surgery. He even played in his baseball game Monday night (I was shocked the doctor cleared him to play--but it went fine, and he felt great.)

    Activation day is next Tuesday! I'm so excited for him to get started. We have tried to explain how different it will sound, and how you have to teach your brain to hear with the CI, but of course he doesn't really understand that. We've been very careful to remind him that it won't be like the "aha!" moment the first time he wore hearing aids. He's so fired up, though. I would be so, so thankful if he could at least understand a little bit fairly quickly. Some instant gratification would be pretty motivating for him lol. I'm not expecting that, though.

    I've been surprised by the people who really don't understand anything about the implant or surgery. I guess I forget how much research I've done over the last year, but some of it I feel like is pretty common knowledge, and people kind of should know. I guess not, though. My in-laws both thought we were doing the surgery so he didn't have to wear a hearing aid/processor on his ear. 1) I totally blame my DH for obviously not talking to his parents about it, but also 2) what kind of parents do they think we would be to let our 7 year old have surgery for vanity's sake?!?!?! I really got pretty pissed off about that, but DH told me I was blowing it out of proportion. (Again, I blame him for not talking to them lol. I should have explained it.)

    Do you ladies have any tips for preparing him for activation day next week?
     
  5. deafgal01

    deafgal01 LTTTC #1

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    I don't have any tips but I do wonder if any of them do. I can ask my girlfriend if you want - I know she has two implants, one from when she was about 3 I believe, and the other one is more recent - few years ago. As I recall, she said activation day and any "programming" day afterwards, always left her feeling exhausted and she had to nap or something after that appt.

    So it may be normal for Denny to feel tired/exhausted after the activation.
     
  6. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Thank you, DG! I'd love all the advice I can get!! : )

    I've read that the appointments are very time consuming and tiring just from hearing all the new sounds. He has an appointment on Tuesday to get it activated, and then again on Wednesday to do some more initial mapping/turn ups. What he's most excited about is swimming (we ordered all the waterproof accessories) so I hope he at least has enough energy to swim that afternoon.
     
  7. deafgal01

    deafgal01 LTTTC #1

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    My girlfriend with 2 cochlear implants said this - "I recommend taking an aspirin before the mapping and activation. She or he will experience headaches after activation. The aspirin will make the recovery process easier to bear. He or she will most likely fall asleep after activation because his or her brain receives so much stimulation after a long time with no sounds. Also, I recommend bringing one special toy for comfort and some books to keep him or her busy during mapping. Sometimes it helps to keep busy instead of waiting to hear the sound. "
     
  8. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    Its hard for me to say about the initial appts since my daughter was so little, only 12 months, so we couldn't really prepare her for it, and harder to gauge her reactions really. I think the initial appt took about an hour, with follow appts every two weeks for a bit. Now, 3 years later, we go about every 4 months for mapping, usally those are about 1/2 hour. and I can say at this point, the appts are not particularly hard or tiring for her just routine. I'd say that's been the case at least from about 6 months post activation - easy quick, not really issues.

    But from adults I know with implants, they have said the initial mapping can definitely be tough. For my daughter she never knew any different as she never had sound at all before. For someone who has had exposure to sound, hearing things in a new way takes some getting used to, and can even be emotional and troubling at first, but in a little time and with practice things start to sound "normal" again.
     
  9. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Thank you so much, ladies! Your advice was spot on!

    His activation was Tuesday, and the first mapping was Wednesday. We moved him through 4 programs the first day, and that was hard, but he tolerated it well. By the end of the day on Tuesday, he was starting to understand speech. After the appointment on Wednesday, speech really opened up for him--he is doing an excellent job understanding women's voices, but is still having a hard time catching most of what men say. I guess that is just a matter of what pitch is easier to hear and understand right now. He and I can carry on a normal conversation, but he really has a hard time catching what my husband says. But we have three more programs to move him through over the next three days, so hopefully that helps clean up some more sounds for him.

    I'm just so thankful it's going well so far!! He has a baseball game tonight--His audiologist said he can take the implant off the right side and wear his left hearing aid for the game. (Right now he has his left ear plugged to force brain to use the implant.) He really wants to try both together, but she said that may be hard for him right now. (The plan is to reintroduce his hearing aid on July 13th.)

    Anyway, he's doing great, and I so very much appreciate y'alls support and advice!! : )
     
  10. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    That's wonderful! Mt daughter did tee ball in the spring and we had to modify her helmet so she can wear one implant. Kind of a pain, but it worked out okay.
     
  11. deafgal01

    deafgal01 LTTTC #1

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    I'm so pleased to hear that the tips/advice were really spot on.

    It sounds like he is doing fantastic adjusting to the implant! Keep us posted on what happens as they add on more programs.
     
  12. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Thank you so much, ladies!!

    Mrs. AJ, how did y'all modify her helmet? I've wondered how to make it work. I found one helmet that has adjustable pads that you can inflate/deflate that I thought might work for spring ball, but it was about twice the cost of his current helmet. Of course we will get whatever he needs to make it work, but if you had a cheap solution, I'd sure try it lol!
     
  13. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    So she has both sides implanted and just wears one when she bats. She's right handed, so we just removed padding on the right side of the helmet (ear away from the field) enough to fit her implant in. She's just in tee ball so it doesn't matter so much, but I have a friend with a 12 year old son who does the exact same thing...unfortunately there are any *great* solutions.
     
  14. deafgal01

    deafgal01 LTTTC #1

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    I'll have to ask one of my students about hers. I just now asked my husband because I know we have a girl playing on the softball team for high school and she uses two cochlear implants. He wasn't sure, but he knows she takes one off when she "bats", but rest of time she tends to wear both of her implants (again, I'll have to ask the girl when i see her again at end of July).
     
  15. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Thank y'all so much!!! He is only implanted on the right side, but he does wear a left hearing aid. We might be able to just remove some of the padding.

    Right now, he prefers his Kanso processor over the Nucleus 6, and it would be easier to bump off. But, I think he prefers it because of the novelty of nothing on his ear, so who knows what he will want by spring baseball.
     
  16. Mrs. AJ

    Mrs. AJ Mom to two under two!

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    Oh yeah I can't see how the Kanso would work with a batting helmet since it sticks out too much. We also have a headpeice set up with an additonal magnet for baseball and also for her waterproof headpiece. My daughter has AB though not cochlear so I know it's a little different. Parents have come up with lots of different creativersions solutions for things :)
     
  17. SoBlessedMama

    SoBlessedMama Well-Known Member

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    Hi ladies--we had appointments for both boys today, and wanted to do a quick update. This is copied and pasted from my journal, where I felt like I needed to do some "hearing" explaining that I know you ladies already know, so please excuse the redundancy. ; )

    We had another follow up visit for Denny today. They had him go in the audio booth for a quick check before they mapped his CI because his audiologist just wanted to see where he was. She was shocked and so excited (so were we!!!) that he is already hearing sounds within the "normal" range of hearing! Of course understanding is not quite up there yet, but it gets better every day. As far as hearing tones in a test booth, unaided before surgery he could hear at about 90 decibels (profound hearing loss). With his hearing aid in that ear, he could hear at about 40 decibels (mild hearing loss). Today, with his implant, he could hear tones at 20 decibels (normal hearing)!!! We are so thrilled, and he was really excited to see how well he performed.

    Davis also had a check up today--and his left ear has dropped about 15 decibels. His left ear is now almost exactly where Denny's right ear was when he decided to get the cochlear implant. So, we started the process of looking at surgery for him, too. I know in my heart it is the best decision, and I don't have nearly the anxiety I had over Den's surgery (kind of feel like, "been there, done that...") The only thing that is causing me some mixed emotions is that Denny was old enough to say, "This is what I want to do." We don't really have that luxury with Davis, though. If we want him to get the full benefit from the implant, earlier is better. (It has to do with the amount of time that has passed since the hearing was lost--not necessarily age.) So we couldn't wait until Davey was 7 like Den, because then he would go almost 5 years without accessing the full spectrum of sound.

    But, seeing how awesome it has already been for Den, I really think it is the right decision for Davis, too.

    So, the plan for now is to schedule a scan to make sure he is a candidate for surgery (as far as ear structure, etc. go), and possibly look at surgery over Thanksgiving break with activation being over Christmas break. We will see! : )
     

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