Tuesday, May 6, 2008


Abbie, you are an amazing blogger! The detail of your posts. How can you remember all that you do? Gosh I am getting old, I can barely remember my name! And thank you for keeping up on Brianna's progress. And thank you to everyone for your support!

We are 2 weeks away from activation. And boy do I have a ton of questions. Should I list them? I don't want to seem to demanding, but advise is openly welcome...

1. Is there anything I can do to prepare Brianna for what she is about to experience? I have noticed that she wants desperately to please me. So she tries to have the reaction that she thinks I want her to have. I am afraid that she may say that she is hearing something different than she is hearing just because she thinks that is what I want to hear. She is such a sensitive and caring child. Just a blessing!

2. What will she hear. I read that voices will not sound like voices. Ducks, Mickey Mouse, gibberish. Does anyone have any description of what it sounded like to them or their child?

3. How overwhelming will this be for her and her brain? I hear that you get really tired after activation from all that your brain is learning. Should I plan on keeping her home from school? Or do you experienced CI-ers think she is fine going to school the days following initial activation?

4. What comes in the kit? Call me a kid in a candy store, but I love reading manuals and playing with cables (I am in Information Technology and just such a dork). But I am dying to know what neat things she will get in the kit. She has Nucleus Freedom implants. Will she get cool stuff? Cases and whatnot?

5. Is there anything that I can do at home to help her with learning to use the implant once activated? This hasn't been discussed with me, and I am sure it will. But a little head start doesn't hurt, right? I read that books on tape are good. What about cartoons with captioning? Any other fun things that you all can think of?

6. I don't know if it will be a problem or not, but I have read that sometimes the implants can be overwhelming at first. Is there any tips from you parents out there to help Brianna want to wear them? Just in case she says she doesn't want to. I don't want to force her (I will if it comes to that), I just want them to be fun, and interesting and helpful to her. So that she wants to wear them. Did anyone go through their child not wanting to wear them in the first few days? Or did you yourself not want to wear them? Why? What got you through it?

7. What can I realistically expect? Deep down, suppressed in my innermost thoughts, I hope that Brianna will be activated, and she will understand me, and hear the world. But realistically I know that is not how it will go down. I don't want to go in there hoping for magic and get disappointed. I have read so many activations, and watched the videos. It is so hard to tell if the expressions are good, amazing and wonderful, or if they are disappointment, regret and sorrow. Please fill me in if you have any advise.

I feel like a needy worry wart! To tell you the truth, I am so excited! I can't wait for the "what is that sound?" and the "THAT is what a bird sounds like?!" moments. It will be like having a newborn. All those firsts, just different firsts. You all know I am sure. I am just counting the days, hours and minutes!! (that's 13 days, 14 hours and 5 minutes for all those counting along with me!!!)

A little note on the happenings of this week. Brianna went back to school yesterday. Her class brought in money to send her a bouquet of flowers and a cookie expressions bouquet. And they each made a personal get well card for her. It was the sweetest thing. Reading those cards made my heart melt. Who knew so many 7 year olds were so unselfishly thoughtful? So this past weekend, Brianna and I made "Cochlear Implant Bracelets" for each of her classmates, and her teachers. They consisted of a silver spiral in the middle and colored beads on each side. Really cute. I will put a picture up. Anyway, she and I made them, and I wrote up a little something for her to read to explain their meaning to her class. Apparently they were a hit (who doesn't like a cute bracelet?).

She is doing well with going back to school. She bumped her head on the bus this morning and the school nurse called me after she calmed down to let me know that everything looks fine, she just was a bit shaken from the experience. When I asked her about it at home all I got was "The bus stopped and I hit my head. It's fine now." So I guess it was really ok! She is such a tough cookie, but worry wart mom called the doctor anyway. He of course said that since there was no bleeding or sign of trauma, she is fine until she goes in for her follow up on Thursday. You can never be too worrisome when it comes to your child, right? Anyway, she is doing great. Even with having no hearing, she got a 90% on her test yesterday. It was a practice state test. She takes them a few times a month to practice for the real one next year. Her grade before we got the student teacher for Brianna was a 68%. Big improvement. Thank goodness she really does go to a school that it more concerned with her academic success than anything else. I love this school district. Next Thursday Brianna has a field trip to go see a play. I asked that they try and seat her as close to the stage as possible, since she won't be hearing anything. I hope they do that for her. Then on June 5th, she is off to the zoo with the other children with hearing impairments. I hope that by then, the implants are really starting to work for her. How amazing it will be!

Ok, I am exhausted. Good night to you all, and thank you (in advance) for your input to my many questions!


Abbie said...

Awwh, I don't know what to say but thank you! :)

I can answer some of the questions regarding what she is going to hear. I am sure some moms will chime in about preparing her.

When they start raising the volume, everything will sound very cartoonish, like the munchkins at the Wizard of Oz. From what I am told, audiologist take it very easy with children with the volume. With my activation, nothing sounded normal. I couldn't understand speech but I could tell when someone was talking if that makes sense to you.

I say send the kid to school :) Mappings can drain you but I don't know if affects kids the same way it affects adults. Adults are more proactive with their mappings. Children audiologist approach it differently.

I don't remember if you told me if she is getting AVT - Auditory Verbal therapy through school. If she doesn't, I would look into getting that for her. The type of exercises they do can be continued at home since it is a round the clock hearing experience but it doesn't have to be tiresome.

Upon activation, just keep saying that is great she is hearing something. Keep it optimistic and reassuring her that it will get better with each day. Activation is not about how well the CI works, that comes six months or a year down the line. It is about turning the power on and getting the ear used to hearing with it.

I am sure some moms will be along with some motherly advice on the rest of the questions. :)

Drew's Mom said...

Yeah, the countdown is on. I'm sure you feel like the clock is moving in slow motion...

To try to answer some of your questions, from my limited experience:

Drew was VERY, VERY tired when activated. He took two, two and a half hour naps plus slept 13 hours at night when activated. He was overly tired from learning to hear. I can't remember how long that lasted, but it was a few weeks, and seemed that it ran through those first mappings. Now, he isn't affected by the mapping because they are just adjusting some frequencies, not increasing the overall volume, if that makes sense. I would expect that Brianna is a bit more tired, but I wouldn't hold her back from school. She'll let you know if she is tired.

As far as what she will hear, Mom to Toes has an EXCELLENT link of what a CI sounds like in her link bar on Erin's blog. I would check that out!

Gadgets - oh there are tons, so if you like that stuff, you are in luck! The audiologist will take a good portion of the initial mapping to explain everything. Also, there is a video that comes with everything that you can watch. We got cases to hold things in, two large boxes, etc. It took me months to get everything for two ears organized. We didn't (and still don't) use a lot of things, like the IPOD cables, etc. You can experiement as you get more comfortable, but everything you need to know will be addressed at activation.

Enjoy this time! It is so exciting to see what things they respond to. Don't set your hopes too high - they turn the volume up slowly. So initially we were excited about a reaction to a drum or the door bell. (At that point we had to show Drew where the sound came from so that he knew what it was to help with his auditory memory). As time went on we would notice that when he could hear something he would repeat the action over and over - like running his finger nails over a textured table. It is quite exciting. There are so many "CI Moments" that happen on a daily basis. You're going to have SO MUCH FUN!

Can't wait to see some video!

Laurie said...

Hello! Drew's mom sent me here. . .I'm sure you are anxious about Brianna's activation. I'll try to help you with your questions:

1. Preparing her . . .tell her it will be a new day with a new experience and just go with the flow. Just be available when she says, "What's that noise?" "where is that sound coming from?" One thing my son did was to move his hands to the beat of the clock so I could pick it out or concentrate on the sound he was trying to show me.

2. She will hear voices. . .but everyone is different. Depending on her map, she may just hear "noise" when someone starts talking. If she is a lip reader, she will be able to match the sound with the lips.

3. Send her to school! She can always take her "ears" off if it is too much, or turn it down. She might be tired and will want to take a nap or take them off for a while. She will do fine as long as she has a great support system! I'm sure her teachers and friends will be supportive. I'd be concerned about LOUD noises scaring her if she doesn't know what they are. But again, her first map may be a quieter one.

4. The kit! Everything! You will get some earphones so that you can hear what she is hearing. She'll get some accessories to plug into an iPod, extra covers, batteries, etc. Every kit is different. Since she is a kid, she might get different things than an adult would.

5. Therapy. . .talk to her. When I was learning to hear with hearing aids, my mom made a scrapbook with pictures and we practiced saying the different items like car, truck, ball, etc. Books on tape are good. A/V therapy helped me the most to learn to distinguish the different sounds.

6. See answer 3. :)

7. You can expect LOTS of questions from her! What a great journey you are starting!

Best wishes to you and your family. I'm bookmarking you so I can keep up with your progress!

~Laurie in TN

elizabeth said...

I just love reading about your journey! Y'all must be getting so excited for Brianna's ears to be turned on any day now.

Here are some resources for while you wait:

(user manuals for Freedom CIs)

(guide to Cochlear accessories)

(shameless plug -- this is a link to a book, written by me, Elizabeth, and illustrated by Rachel Chaikof, a bilateral CI user, about a 3rd grade girl with CIs. It explains the whole process in a way that's easy for children to understand and also talks about explaining the CI to classmates. Brianna might like this!)

You can find even more resources @ www.cochlearimplantonline.com, a site Rachel created that she and I both write -- it's updated almost daily!