Wednesday, August 26, 2009

Our new look!

new look

new beginning

new found hope

Saturday, August 22, 2009

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.


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.

Thursday, August 13, 2009

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.

Wednesday, August 5, 2009

Growing like a weed!

We went for our regular 6 week weigh-in...
Height: 75.5 cm (0.5 cm longer from last visit)
Weight- 18lbs. 7oz. (up 1 lbs)
Head circumference: 44.5 m (up 1.5 cm)

She is very close to 20 lbs... she is on an upward trend, this has never happened, it always was more like a roller coaster ride.

Our pediatrician at the Glenrose believes that CMV is the probable cause of her growth delay however she does not want to miss anything so she is referring us to the Pediatric Endocrine Clinic for an assessment. They will check her growth hormones which could be causing the delay.

She is getting closer and closer to walking! She lets herself go when standing against something... she's working on her balance.

As for her CI implants, we are less than a week away from Sienna's activiation! Can't wait!