Wednesday, May 21, 2008

1 Day Post Activation...

So this morning was easy. Brianna was eager to put the speech processors on. She is really good at putting the right one on. That was the side with the hearing aid, so she has had practice. One thing we are having a problem with is keeping the BTEs on her ear. The double sided tape isn't working yet because it bothers her incision. So I used the snug fit ear hook. It hooks around the top and bottom of the ear. She said that was bothering her too by the end of the school day. So I have come up with a solution until the incision stops bothering her...a fabric headband. I put the headband behind the processor, over the cable. So now if it falls off, at least it won't fall to the ground. Funny story....(well funny now anyway.)
So I dropped the girls off at daycare. I showed Miss Anna (the daycare provider) how to attach the processor to her head. I left and headed off to work. About 9am, I received a phone call from an upset student aid (Mrs. Schurr). She is the wonderful woman who I am giving credit for Brianna's continued success at school during this time of total deafness. Anyway, she proceeds to tell me a story of a beautiful little girl, who received her bilateral cochlear implant processors yesterday, and for some reason, this little girl decided to jump off the school bus into a puddle. Now, when this jump finished, in what was, I am sure a wonderful landing, the processors flew off her head and into a rain puddle. Obviously upset, the wonderful little girl picks up her processors and runs into the school to find her student aid. Upon placing the processors on her head, they are not working. A flashing H6 is displayed on the LED panel. In disbelief, the student aid calls this lively little girl's mother. That's where I come in. Now, I must tell you, hearing this, my heart slowed. I don't even think I was breathing, until the H6 part. I haven't memorized all the error codes, but this is one that I know. H6 means that the speech processors are on the wrong ears. I had Mrs. Schurr and Brianna switch them. Sigh of relief, they work now. My goodness, can't my little girl pretend she isn't a 7 year old for just a few days! Does she really have to test the "water resistance" of the processors after only having them for 1/2 a day?!?!? So, they are in the drying kit right now, but all seems well. I can laugh about it now. So, we have learned 2 valuable lessons here: 1. The speech processors will survive a fall to a puddle on the ground, and 2. Brianna is Brianna. :)
As far as progress today, she said that everyone sounds a bit more clear. Children sound like they are chewing something while talking, and adult women sound like they have a sore throat. We played our game where I cover my mouth and she repeats. She gets her name right away. I did fire truck, and she got fire right, but couldn't get the 2nd word. I did I Love You again, and she got that. And I did orange, which she also got correct. She was so proud. She used her 2nd program today, and didn't complain about it, so that's good I think. Tomorrow we go for another mapping. We will get her beige processors then as well. Now we will have a backup. Brianna really doesn't want those ones, so I guess they will really be spares and for emergency only.
I really want to thank you all for your continued support. This is so much more amazing that I ever imagined it to be. She hasn't said "what's that?" yet to me, but everything else she does is just wonderful. I am amazed. Brianna has always amazed me, this I am sure will never end. She is great!

Tuesday, May 20, 2008

And Brianna Hears!!!!!!!!!!!!!!!!!!!!!!!!!!!!

Activation went great today! We got there at 1:40 (I got lost on the way!) and we were finished at about 3:30. Not too shabby. Here's what happened...
Right Ear:
- Michelle started with electrode 22. About 4 minutes of different beeps, and nothing. She moved to electrode 20, and about 5 beeps later Brianna raised her hand. There was clapping and many smiles!
- Many, many beeps later, Michelle turned the one side on. Brianna was live, and frankly just as "Brianna" as ever. She didn't have the "jolt" of sound like I have read about. She said that everything sounded like beeps. She heard us talking, but we were talking in beeps. She described them as high pitched beeps.
Now for the Left: (the bad side)
- Lots of beeps, and Brianna started raising her hand pretty quickly. A couple times she saw Michelle press the button on the PC, and raised her hand early. So, the left ear is kind of a guess I think. We couldn't tell if she was just raising her hand or if she was really hearing. The left and right program are pretty similar.
- Michelle turned on the left side. Now we got the jolt. She said that it hurt her head. But the pain went away quickly. She kept saying that everything sounded like beeps.
So we left. Things weren't great, but they were amazing all the same. So in the car, I turned on the Disney CD and first thing Brianna said was "I hear music". Not beeps! I turned down the radio and she noticed that as well. "The music stopped." I turned it back on, I was done testing her for now.
I dropped off Brianna and my parents and went to get the other kids from school. When we all got home, I called Brianna's name and she turned around. She said "I heard you say Brianna!" I asked her if she wanted to play a game. Lets see what she can do with these new ears! So I covered up my mouth with a book, and told her to repeat what I said. Her answers are the the parenthesis.
1. Brianna (Brianna)
2. I love you. (I love you)
3. Sponge Bob (Sponge Bob)
4. Hippopotamus (Hippo-what?)

After that she was done playing, but OH MY GOD! My baby can hear! I asked her what I sounded like. She said my voice sounds like mickey mouse with a sore throat. Everyone sounds the same she said. But who cares, MY BABY HEARS!
So tonight we were getting things put away. She received so much! I haven't gone through it all, just read the manual and watched the DVD. We put the processors in the drying kit and Brianna unwillingly went to bed. She wasn't tired, and actually quite upset that she had to take off the processors. But she understands. So tomorrow we try the disposable batteries. I think this weekend we will do the rechargeable batteries to see how long they last.
I am so happy, and I know you all are as well. I do have video, but I am way to exhausted to do it tonight. I have editing to do, I am sure you all don't want to listen to the 40 minutes of beeps! Thank you all for the prayers and well wishes. We appreciate it all.

Monday, May 19, 2008

Tomorrow is Activation!

So tomorrow is Brianna's activation day. I have the camcorder battery charging. I have to stop by Best Buy and get a mini-dvd before her appointment tomorrow. But other than that, we are on our way.
I think I have had all my questions answered, and despite every one's advice, I am still really hoping for that miracle moment. I know that either way, this is the first small step into a wonderful world for Brianna. I am so excited about all the "What's that?" moments, and hopefully her understanding some sort of sound. Even if it's buzzing or beeping or anything.
How amazing is it that we have come so far. Even though we as a family are new to hearing loss, and are privileged to have the benefit of existing technology, I can still appreciate the great strides that have taken place. Who would have ever thought that a beautiful little girl would be given the chance to possibly hear the things that she hasn't in so very long. I want her to hear me say "I love you". She reads my lips, or I sign it to her now, but that is the moment I am craving. You all know it. I know most of you have either been there, or are in the process of going there.
These past few months have been so dramatic, so tiring and so darn rewarding. I can't wait to update you all on her big day. This post is typed in PINK, and that's because her processors are pink. Brianna is a typical girly-girl, and that's the color she wanted. So that's the color she gets! She told me today that she absolutely MUST wear the pink ones home. And she has her outfit ready to go, so that she matches just right. I tell you, my beautiful daughter is just so darn strong. I can't imagine what I would be like in her shoes. Locked in a room somewhere just wallowing in self-pity I am sure. I don't know where she gets it from, but she is one tough cookie. So, here's to Brianna, becoming fully "Bionic" on May 20th, 2008. I LOVE YOU!

Tuesday, May 13, 2008

Activation in 1 week! Whoo Hoo!

Brianna's activation is in one week! She is just doing great. For mother's day she made me the cutest hotpad. She is such a cute little girl. We were outside playing in the backyard, and she put on a "play" for me. It consisted of her singing (in her beautiful, off-key, out of rhythm voice!) "You are my sunshine". She had hand movements and everything worked out to go along with it. When she finished, she did a cartwheel. I almost lost it. My heart jumped, and I thought, "NO! You will damage the implant!!!" Of course she didn't. I guess those little moments where I overreact and my heart jumps, will be something I have to get used to. She is such a daredevil. Man am I in trouble!
So, one week away. I think we are ready. She is ready. She has been adjusting really well. Her hearing is back to where it was before the surgery, it's not much, but she can hear me if I yell for her. She can't wear the hearing aid, even though the doctor says it is fine. When we put it in her ear, it won't stop squealing. The audi said that this is probably due to swelling that hasn't gone down yet, so the ear mold isn't fitting well. But gosh darn it, my daughter can hear me yell! It's probably not the greatest for her, since all she hears is me yelling (If I need to get her attention or honestly just to test her to see if she can hear). But I am so happy about this.
I know why this makes me feel better... and in hopes that this will help someone in the future...I will share. I was scared that I was doing something to her to ruin her life. I really thought that even though her hearing was bad, and not going to get better, if she had it, all is not lost if the implants do not work. I don't really know how to put my feelings on this into words. I was just plain afraid of making the wrong choice, so I figured if her hearing stays the same, and she has the implants, the worst that will happen is she will be where she was before the surgery. Now knowing that she can hear as she did before, my gosh I am breathing easier. I know it was the right choice, whether her residual hearing was retained or not, but I just wanted some sort of "insurance"! So there's my deep, dark, inner secret!
On another note, thank you to all who have commented to me. Your thoughts, tips and information are so appreciated! I finally have the feeling like I am not alone in this. Even though none of you are here with me in person, you are here with me in thought. And that means so much to me! Now, for another favor from you guys...I want to record her activation (and post it if I can figure that out). I have a camcorder that records on mini-dvds. Anyone have any suggestion on how many disks I should get? I think I can record on SD Card as well. What do you guys suggest? How long is the activation? I have seen a bunch of videos, some with multiple parts, some only 5 minutes long. So, info on this would really help! Thank you in advance!


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!

Saturday, May 3, 2008

Counting down to activation!

So we are counting down. 17 days to go. Brianna is doing great. She is not taking anything for the pain anymore. Actually, she hasn't had Tylenol in 2 days. She isn't hearing anything, so looks like she fell into the 30% chance of no residual hearing. That's ok, she is doing fine. She isn't traumatized from not hearing at all. She understands more than I thought she would. She knows that the best is yet to come, and she is excited. I am keeping this short and sweet tonight, I am tired!
Thank you for all the prayers and well wishes. You are all wonderful!