CI Inconveniences

We have been very proud of Sienna and her progress. We look at her as being “normal”, the miracle of technology is slowly but surely bringing her up to par with her cousins and peers. She communicates well, she is starting to count, she is singing, she imitates our words; she is interacting with her older sister, strangers are beginning to understand her. However it is still very difficult to “deal” with all the equipment she needs to put on day in and day out. From faulty processors, to recharging batteries daily, to constantly repositioning her CI’s around her ears and on her head…it makes our life forever dealing with the inconveniences of technology.

Problems we’ve encountered:

-Presently one of the screens is missing a line…so I need to call Cochlear and figure what to do next.
- Sienna got a hold of her second set of rechargeable batteries that I alternate with, couldn’t find them for 2 weeks. Then one day I found them in the washer after I had washed a pair of her shorts. That stinker! Miraculously they still work.
- Sienna is beginning to wear her CI’s in the vehicle which is great because this is when we sing, we say the alphabet, we see the trains, the animals, etc. However, just this week, my mom took her out of the car and little did I know her CI had fallen on the ground. I thought I had it at home (being pregnant and all, my memory just isn’t there), anyway after 4 hours of looking at home and crying, I finally found them on the ground outside!
- Just in June we had to replace a processor after we needed to remove the battery to turn it off. That’s after we tried two replacement controllers to find out that it was the processor.

We wonder what it will be like later on, when Sienna’s older and she is dealing with these inconveniences. Every once in a while whisper to ourselves, life isn’t fair for our little girl who for the rest of her life will be dealing with all this equipment. Some of the questions and issues we have been dealing with are:

• The constant removal of them when she's in the pool or jumping on a trampoline (fun hearing moments she is missing out on)?
• How will she take swimming lessons?
• Will she ever be able to wrestle around with her sister and dad without having her CI’s fall off?
• When will she be able to play independently without me worrying about her CI’s falling off, losing them or breaking them?

All these questions come and go, they soon pass, and the worrying soon subsides as we realize that these very small inconveniences are small prices we pay for giving Sienna the gift of hearing.

We are currently dealing with the best way to have them fit on Sienna to make our lives easier and of course to make it easier on Sienna. We have been using the ear molds with the baby worn set-up which means every 3 months we need new molds, we are dealing with cords and they still require constant monitoring to ensure they are on properly. So for the last couple of weeks we’ve been trying the snugfit with the baby worn and I’m not a fan of it because they bend her ears and they still do no remain in place. So, thanks to Megan, Lily’s mom, I am ordering the headbands that a lady makes which she loves, loves, loves. Can’t wait to try them, we are willing to try anything at this point. If you have any other ideas for our little girl, please share!

Sienna's Activation video, at last!

Video is from August 11th, her CI activation. What a great reaction!! The big frown, the look around, the arms out and of course the turn to mom, it was just too much for her.

UPDATE:

We have begun seeing our SLP, Lindsay, in Peace River. We go once a week and we have a schedule of activities that we do. Right now it's all about receptive language for Sienna. She is taking it all in. You can tell that she is hearing everything, I just love it when she turns her head to me immediately after I start talking to her. We read to her everyday, we sing songs and we repeat everything...and by the way we have chosen to do all of this in french. We are a bilingual family, we are French Canadians. My husband only began speaking english when he was 6 years old and as for myself, my mother is english and my father is french. I went to school in french and received my Bachelors of Education in french. Rylee is bilingual, she speaks both french and english and sometimes frenglish. We cannot close that bilingual door just yet for Sienna. Our bilingualism is a part of our culture, our identity, our pride. I am a teacher, I believe that with Sienna being immersed in the two languages she will do well. However, I am open to the fact that at the end of the day, if two languages is too much for her, we will drop the french, and english will be her only language. Our SLP researched CI and bilingualism and found out that as long as the CI child is immersed in both languages, it is possible.

Hope you enjoyed the video!

2nd mapping accomplished, one more to go

I returned from Edmonton yesterday, this time my mother came with me. Thank-you for the company and helping me with my girls.

We went for our 2nd mapping appointment, it went very well. Sienna has worn her CI's without a fight for over a week now. I put them on every morning and she wears them all day except for when she naps and when we travel. She is very cooperative, she actually attempts to push it in when her ear mold falls out. Our audiologist gave us 4 more programs to work through. We do return on September 9th for the last of the 3 initial mapping appointments.

From the beginning, even before we knew she was deaf, I always said she was my little social butterfly. She is very interested in communicating, she reads people very well and she is always smiling. This is why I am so very excited about what she will be able to accomplish now that she has her CI's. I am wanting to begin a routine with her... my own speech therapy at home. The teacher in me is coming out. We are from a small town and our resources are limited. Her SLP is about 45 minutes away and has limited experience with hearing impaired children. She is very interested in learning and keeps in contact with the SLP at the Glenrose Hospital. However I feel like alot of the work will fall in my hands. That is why I am interested in taking webinars, online sessions, correspondence courses ... I just need a few more hours in a day!!

I find I am focusing too much energy in "looking" for those hearing moments, reactions to a sound, her head turning to my voice or any kind of "Aha" moments. Instead, I need to just relax and play with her, let her be a 2 year old. Sound to her right now has no meaning. My voice is just another sound. I can't wait to move her up through to program 4... so we can put her in her optimal hearing range... so she can look at me when I say Sienna. I've been waiting a long time for this.

CONGRATULATIONS TO SIENNA!

She is standing on her own for a couple of seconds.

She is taking a few steps.

She can go to a standing position from a squatting position.

Keep it up, we are almost walking.

The BIG Activation Day!

The realization has set in that this is really happening. Our little girl has entered into the CI world. How exciting is that!!

My sister, Anne, my brother in law and my niece joined us on this special day. It might help to know that, the Glenrose Rehabilitation Hospital is not a hop, jump, skip away from our home. We are a good 4 hour drive north of there so when my family comes for support, we appreciate it enormously as they took minutes, hours and days out of their schedules to spend it with us. Thank-you.

August 11th will always remain a special day in our lives. Before she was "turned on", our audiologist checked everything and all 22 electrodes are firing on both sides. This is great news as usually there are always some electrodes loss. Sienna cooperated very well, in part because her older sister, Rylee, was playing very nicely with her but also because I had marshmallows for her.

I, nor our audiologist, could not have predicted a better reaction. When the sound first came on, she made a big frown, looked around and put out her arms as if she was saying, "What in the world was that?" Our audiologist turned it off for a minute, we signed "all done". When she turned it back on, Sienna again had the big frown and now she signed "all done". We nodded our heads and said, "Not all done, Sienna, this is just the beginning." She then turned and hugged me, the sound was now scaring her. Our audiologist set the sound conservatively and has given us 4 programs, each one giving her a little more sound. By next Friday, when I need to return to the Glenrose, we should have worked our way up to program 4 slowly, depending of course, on Sienna's reactions. We need to make this a positive experience for her, the last thing we want to do is scare her.

As we walked out of the hospital, we could not help but feel sad. Saddened at the thought that for the rest of her life, she will need this equipment. First thing every morning, she will need to gear herself up to be able to hear the world around her, and the last thing she does before bed is take the gear off. This is a forever thing. When she first got her hearing aids, we needed time to adjust at the fact that she's always going to be different from the rest of the children. Again with the CI's, we seem to be going through those same feelings. A feeling that is hard to describe. A feeling my husband and I both felt. For a moment, when Sienna's CI's were first hooked up, she seemed as though she did not belong to us. "Who is she, really?" This feeling did not last long, we decided to come home that same day. We needed that alone time with her to remind us of who those little eyes belong too. They belong to our little girl who came into our world on August 28th, 07. Our little girl who is comical like her father and persistent like her mother. Our little girl who we will love unconditionally.

The next day, we spent time, fiddling around with her Ci's, helping them stay on her ears better. Her ear molds definitely work better. I remember a mother had sewn pouches on the back of her child's shirt. I'm going to try sewing a pouch on a few undershirts to see maybe if that'll work. I just find the babyworn clips so bulky. This is a learning experience for us, we will take each day as it comes. As soon as I have more time, I will post a video and pictures.

Thank-you to the CI moms out there who have been there for us. We will always need you.

Thank-you for the miracle of technology that is allowing our little girl to hear.

Successful Surgery

Well we survived probably the most difficult part of the whole cochlear implant process... the surgery. Nothing could have prepared us for the long wait we endured at the hospital on the 10th of July. We were told it was going to be a long day but as the day passed, we couldn't help but worry as our little Sienna was in the hands of our ENT surgeon. Without doubt, we knew she was in the best hands possible, the Stollery Children's Hospital, and in the trust of our surgeon.

We arrived at the hospital at 6:00am, I gave her a kiss goodbye as her eyes slowly closed at 7:45am and then the waiting began. If it wasn't for my parents who hung out with us for most of the day, we probably would have not made it. They are the most understanding, caring and the most unselfish people I know... they are always there no matter what. We love you enormously for that. We finally seen our little sunshine at 6:30pm, 11 hours later. She was lying there, still groggy from the sedation, but alert enough to wave hi to my mom and dad. Rylee did very well with the entire surgery thing. When it was time to go, she kissed her older sister and sang her "Twinkle, Twinkle Little Star." Sienna woke up at 2:00am, she had pulled out her IV and thankfully the nurses decided that as long as we gave her enough liquids, they would not put the IV back. Thank goodness! For the rest of the night, she slept off and on in my arms.

The next morning, the ENT intern took the bandages off. I closed my eyes as he took the bandages off and to my surprise they didn't look bad at all. The incisions look amazing, I can't believe what great work they did. We would have been discharged Saturday morning but she had an awful cough. Because she had a runny nose before the surgery, she ended up developing a cough and she became congested after the surgery. We ended up staying one more night.

We bought maracas on this special day because in about 4 weeks, she will be hooked up and able to hear them!

A HUGE thank-you goes out to

the Stollery Children's Hospital

Sienna's ENT surgeon and her crew

the many emails, phonecalls, visits, thoughts and prayers from friends and family

but most of all...

thank-you

to the angels from up above watching over our little girl!

Surgery Date

Can't believe it!!

Surgery date is Friday, JULY 10th!

Ummm... that's next week.

Don't have time to get nervous or scared...

Only excitement going on in the StJean house!

Into the Stollery Children's Hospital, July 10th with hearing aids...

Out on the 11th with

simultaneous bilateral cochlear implants!!

WOW~

Can't believe how fast its gone...

then the real waiting begins for the

Activation day

about 4 weeks later...

Send your thoughts, prayers and strength our way

July 10th marks the beginning of our little girls CI HEARING journey!