It's official. We just got back from Children's Hospital today..I came back bit little dishearted. Up to this point, you know that we have been using his hearing aid for his left ear almost 2 months. It was vague whether he responds to it or not. Plus it's hard because he keep asking for the CI turn on while trying out the aid part. Anyway, it comfirmed our answer today, Cory is not responding to his aid at all. They confirmed it. They did hearing test with aid only...no responds unless it's REALLY loud, which you can feel the vibration in the room. LOL. I admitted I literally jumped out of my chair. I guess they forgot to warn me. So they tried the type that it vibrates in his ear to see if he understand the concept of listening and responding. He did well with that. You could see the confusion by his face expression because it was different than listening with CI. So basically, its done deal. They said he is a candiate for second one..and we need to make a decision soon. The sooner the better because he is young..and is really doing well with first and they (at that age) picks up on auditory really good to become successful. Again, that word "successful"..that is WHAT we want for our children. Am I so wrong to think that? I do know, we love our children unconditionally no matter what they do, its their life, their choice. But, doing this (getting a second one) is NOT their choice, its mine. You can see why I'm mixed up with this. I have to weight the pros and cons..and I really do feel strongly about it. Maybe it's politicial part? maybe it's feeling guilty? what if, what if not? oy!
To answer another mom's question..who did got me thinking...what if there is something better ten years from now? I did asked about that today...she said it can be upgraded, but cost pending ..yes. So I do feel better about that. Its like my hearing aids, I have to pay for them almost every 10 years...so it's basically the same thing. (ya..ouch, I know.)
I keep telling myself..if 10 years or 15 years later down the road, he doesn't want to use his CI (S) anymore. He can just easily take them off. (not the magnet part in his skull) but the equipment. That would be fine with me..that is his choice. I promise myself not to be disappointed or mad or whatever, just respect for who he is. Then I can tell myself, at least he has the both of options (signing and speaking) and we did our best for him. He can make the choice hisself.
It probably sounds like we are going ahead with it..up to this point. But I really hope for some more feedbacks and to hear from others about similar experiences.
ADOPTING A DEAF BOY, OUR JOURNEY & EXPERIENCES WITH COCHLEAR IMPLANTS.
When you asked about "what if something better somes out in ten years" she answered it with an implant answer! My hope is that something better than an implant will come out, like hair cell replacement, which will not be able to be done on a child that already has their cochlea destroyed by a CI! Once a CI is put in there is no turning back unfortunately, that is why I had a really hard time even getting the first one done on Jasmine, it destroys their cochlea! So if anything NEW and improved comes out BESIDES a new CI, they won't be eligable! Thats just my view!!
ReplyDeleteI Have seen many kids at VOC, all with ONE implant, ages 1 and up and they all have very good speech with ONE implant, you'd never even know they were deaf children! I also met a little girl age 7 at walmart one day, 100% deaf, she was two rows over talking back and forth to her mom who was standing in front of me and when she came over I just about died that she had a CI on!! PERFECT speech! I had a talk with her mom outside and YES she was from VOC! So that is my hope for Jasmine, that she will do just as well as all of those children there! I think that seems how Jasmine won't be able to go into Pals in March when she turns 3 that we will probably take her back to VOC where she WILL be able to attend their full time preschool, but we will see when the time comes! She needs more than 2 hours a week thats for sure!
Anyways, just listen to your heart and pray hard on it! The Lord will guide you if you listen to him!! Only YOU can make the right decision for Cory, he is your son and you know what is best for him!
I've enjoyed reading some of your blog, Karen. Sounds like you know which direction your headed. Cory has done so well with his first implant, I would jump at the chance to get one for Julia....and if we could get two, I'd jump even higher! Have you joined CI Circle support group on Yahoo groups. There are some parents on there really happy with their children's bilateral implants.
ReplyDeleteKim
Yes, I know what you're saying Jolene. You have to remember one thing, Cory had a late start. He basically just started speech/listening 6 months ago. He didn't have that advantage like these kids at VOC, they all probably started home training with speech therapy at age 6 to 8 months of age. (like same as me..I started at 7 months of age) So there is a gap of time and he is a late starter. Another thing is very important is EARLY INTERVENTATION, the younger they are the better. I can't take a chance and wait until 10 years for something better because he will be by then 13 yrs old..he may not want anything. I know myself at that age, I didn't want to do any speech or anything. All I wanted was to play with my friends, play outside, sports etc. So its really tough to convince them at that age..speaking from the experience. LOL.
ReplyDeleteSo again, the earlier the better to start. I know from my experiences with working with children with hearing loss. If it doesn't pan out..then I know we tried. That all it matters. Too bad we can't predict or fast forward 10 years so we would then know. But the time is now..so we need to give the best we can. Only time will tell..why wait?
Hi Karen,
ReplyDeleteYou have been faced with some hard decisions. We are so lucky to have all the support and expertise from professionals and friends with children going through the same thing.
All the best go to you on this exciting journey. Is there a date?