Al's First Birthday Party!

I have so much to blog about right now. Besides the fact that I am exhausted from the party and the day, I'm experiencing a huge high from being so happy.

Today was Al's first birthday party and overall, it was an amazing day. Alex showed off his listening skills today more then he has ever before. Today, while everyone sang "Happy Birthday" to my little boy, I was holding back tears of utter joy and relief. We reached this milestone, finally, and oh boy, is it ever worth it.

The first amazing moment I always want to remember is thanks to a gift from Al's Aunt and Uncle. The gift Alex got a Sock Monkey Jack in the Box. To put lightly, the J-in-th-B was not well received. The first time it popped out, it scared the poop out of him. It was the combination of the slow J-in-the-B song winding down and the straggly sock monkey jumping out so quickly...how could ya not be a little "surprised". Anyway, where the hearing comes in to play was later while Al was playing with other toys, a guest began to wind the crank thus beginning the familiar music. It was amazing, Alex immediately stopped playing with his other toy, looked round suspiciously until he layed eyes on the J-in-the-B and began to crawl away. A frightening moment for him was a wonderful moment for me.

A second moment was when all our guests had left and Al, his grandma Hill and I were playing with his new garage/service station. We showed Alex how to put gas into his tractor and when he put the gas nozzle to an opening in his toy tractor, my mother and I would make a filling up noise "tttttssssssshhhhhhhhh". He learned quickly what noise would happen when he put the nozzle into to hole. He smiled and laughed and became very excited because of the noise, I know because we made sure to hide facial expressions and not make any gestures. So fun to play when sound is involved!

The third moment of the night was right before I got Al ready for bed. I was letting him toss around some Halloween candy bars and he discover a smarties box (the only one in the bowl) and began to shake it like a rattle. Based on the video bellow, it is apparent Alex knew that that particular box made that particular noise when shaken. His eyes reveal so much! Again, what a great day and a big THANKS to all who shared it with us.

Pumkin Patch

The other day, Mich and I brought Alex to Howell's Pumpkin Farm. Right out of the car we put Alex's ears on him and let him hear all the new sounds of the day. The funniest was a chicken coop filled with electronic singing and talking hens. Alex looked at them and took off his ears as soon as they began singing! After putting them back on he got used to the noise and looked at them very curiously, looked over at his father and then me and smiled since we seemed to approve of the whole thing! Alex has always been very intuitive and bases his opinions and feeling on his dad's and my reactions.

I think he loved the whole day! I know I did!

Side note, something that is sticking with me lately is a comment made by a passerby who was dinning at the same restaurant as us a few days ago. As this lady was leaving, she stopped to compliment Alex, saying "He is absolutely adorable". As I was thanking her she kept on by saying "No seriously, I have seventeen grandchildren but there's something about him...he is special!" and she walked away smiling at Alex. One day I want Alex to read this, and not to inflate his ego but I want him to know what a cutie charmer he was as a baby!

Ten Days In!

Alex is more happy then ever. I really think this kids loves to hear for the most part. He is so active and a few time he has actually stopped to look around for sound (like the doorbell) and hearing everyday things really encourages him to do more and more every day. As you see in the video above, he is crazy excited running and playing with his ears on.

As all of us get tired of certain things sometimes, well it's no exception for Al's hearing. Sometimes when background noise is really loud or when he is tired and it's approaching nap time, he will just pull off his processors (ears lol) and hand them right over to me one after the other. I know if he could talk he would say "Mommy, I'd like some quiet now please".

Alex's first birthday is coming up, I am busy getting things ready on top of dealing with day to day occurrences. I don't think I have ever been so stressed out in my life, for reasons I will not bore anyone with. But seriously, what get me smiling every time and what makes me forget about all the petty details is ALEX! The kids just knows how to change my mood and he is such a silly monster I can't help but laugh, play, talk and sing with him non stop. For every mother out there, we are just so lucky, let's take the most advantage of our kids, stepping back and remembering the little things they do to make us laugh.

Seventy Percent!

We returned yesterday (October 19th) to Sick Kids so Gina could reprogram his processors. We got to here each pitch that each individual electrode makes and it reminded me of a piano scale. This technology (Nucleus 5) never ceases to amaze me.
Once again, Alex is responding well to beeps and now he is even beginning to show us with his behaviour that he is hearing certain things in his environment. We changed the program in his processors today so he would be at 70% of his hearing.
We also had our first AVT (Auditory Verbal Therapy) session since Al could hear. It went great. Angelina, our therapist would say how smart she thought Alex was when he would concentrate so hard on fitting a heart shaped block into its proper opening. Alex is really smart and figures things out fast. A way he lets us know he hears is that he always looks up at his daddy. He would stop playing and look up thinking it was him or something. When he herd the drum beating behind his head he immediately turned to his dad and made us all laugh.
Near bedtime, Alex was just plain tired of wearing his "ears". He would take one off and right away crawl to me to place it in my hand. It's cool how he knows it's not a toy...again, he is so smart and intuitive. Also, since the program was turned up he is beginning to startle at certain sounds. I was banging his dessert dish against the table and he would blink every time. Crazy! Not even a week ago he was just experiencing sound for the first time and now he is blinking because of it and looking at daddy. I can just imaging the kinds of electric transmissions are taking place in his brain...wow...still amazed.

He Misses The Processors When They Are Off!

Since Thursday October 14th, Alex has been wearing his processors ALL THE TIME while he is awake unless he is in the car or bath. He did continue to cry every time they were put on in the morning until today! YAY! Alex seems to be getting used to them very fast. It still startles him when they are initially put on and he becomes a huge suck burying his head under my neck.

I keep anticipating the time when I start talking to him or I make a noise and Alex stops straight in his track and looks up or tries to find what is making that particular noise but I know that will come. I was told that Al's activation date is his hearing birthday. He is considered a newborn baby in terms of hearing. A newborn does not know how to distinguish what or who makes what noises therefore, I have to be patient. At least Alex is wearing them a lot, so the more he wears them the more he will develop his hearing.

Also, when I take off his processors or when they slip off, Alex stop what he is doing and reaches up for his ears and touches the naked ears almost like he misses them. It is awesome how he is rolling with this new sensation and embracing it. How fun!

Thought of the day: Can't believe how much easier CIs are to manage compared to hearing aids on Alex!

He Hears! He Really Hears!

Well, he hears! I just keep repeating it in my head over and over: "He hears! He hears! He hears!" Today was, to put lightly, an emotional roller coaster. The following videos show a little bit of the activation. Read on for the break down of today.

Today's wake-up call was for 5:45 in the morning, too early for someone whose mind was racing all night. We made it out of the house by 6:25am, the same time as we usually leave. Today's drive was different then most days in that we were in bumper to bumper stop and go traffic starting in Burlington and lasting all the way into York St downtown Toronto. I kept looking at the GPS estimated time of arrival as the arrival time kept climbing...8:30...8:50...9:05...9:31. I forgot to mention our appointment was at 9am! Needless to say, I started bawling away when 9am hit and we were still 20 minutes away. I kept thinking worst case scenario, our appointment gets re-booked, of course that is not the case because Gina (our audiologist) is so great at what she does, we had plenty of time with the 30 minutes left.

First, Gina was activating some of the electrodes in Al's ears. He has a total of about twenty and only a few were activated today. The following appointments will be for activating more and readjusting the programs. Alex has a four programs in the remote and we have to increase by one every day. Each program is a little bit louder then the last. Alex has been doing so good today thus far, so we increased him to 3 already. It's pretty cool we can control Alex's hearing with a remote!

As for Al's reactions to noise, at first he was conditioned to look up when he heard beeping. When the beeping would go off, he would look up to a bunny and bear in a box moving about. He was hilarious trying to trick us into thinking he was hearing. He would sporadically look where the animals would be and wait for them to come on so Gina would make sure to beep in his ear when he was playing. When he would hear, he automatically stopped what he was doing and looked up. What a great moment! It seemed like he liked hearing the beeps because he was smiled and continued playing.

Then, Gina advised us we were going to go live with the implants which means he would hear our voices and any sounds going on at that time. This was the moment I was dreaming of since his hearing impairment was diagnosed. He was going to hear his mother. I was hoping it would sooth him and he would look at me and smile. On the contrary, I made him cry hysterically! Gina had warned us he would probably cry so we were prepared. Funny, but even though Alex was super scared and upset, I was so happy smiling while my baby cried away. He quieted very fast and acted normal afterwards. Yay! I make him cry but  can also comfort him!

After more talking, a very wonderful person came in Gina's office. Dr. Papsin popped his head in t deliver something to Gina. Right away I went over and asked to hug him which he accepted. After our hug he told my husband he wasn't getting a hug from him. This man has such an ability to make you feel comfortable and happy, turn tears into laughter. He is such a miracle worker and forever I'll be grateful to him.

At the end of the hour, we had to make our way down the hall to the research lab. Since Alex had bilateral implants (on both sides) he has to participate in a research study. He had to do a ABR test. It was long but Alex did so well. The people who work there are amazing with kids and in no way Alex would ever be traumatized by it. At a few points when the volume was too loud, Alex's face began to turn red and he would cry but it was momentary. After it was done, I decided to put his processors back on. All day so far, every time we put them on him he cries.

It must be so scary to hear when you've gone almost a year without it. Now as I am typing here and as Alex is taking his nap, I can't wait until he wakes up and I can stick those processors on him! I am waiting for the moment when the crying wont come. Also, I never realised what a chatter box I can be. Literally I have not stooped talking to Alex...even my husband noticed. well the Rouleau house will not be a quiet house anymore! I was so looking forward to this day, now it has come and past I am looking forward to everything else!

I would like to thank from the bottom of my heart the following people:
Dr. Blake Papsin (Al's autolaryngologist and surgeon), Gina (Al's audiologist at HSC), Pat Fuller (The coordinator of the CI program), The entire CI program team at HSC, the nurses and staff on floor 5A in the recovery unit from surgery, Laurie Shaffer (audiologist at Hotel Dieu Sauver), Jennifer Dunlop (our family support worker and social worker), Angelina Cook (Al's Auditory Verbal Therapist), The audiology staff at Chedoke Hospital and everyone who has helped us get to this point! Sorry if I missed anyone but know we love you all!

Tomorrow is the Big Day!

Tomorrow morning at 9am Alex will be going through something I will never understand or have the chance to experience. When the activation happens I am imagining a wonderful moment where Alex's eyes will light up and he will have the widest smile on his brightened face. Well, that's what I wish, in reality, hearing might be a really scary thing for the first time. I know that most likely he will cry but it's okay because I know it will pass. Regardless, my mind is going crazy picturing what will go down tomorrow. I'm also feeling 100 different emotions at once.

Al's first hair cut (Thanks Ashley!!!)

This week Alex has been wearing his implants off and on since he keeps pulling them off! Two-way tape has been my friend, Alex of course, likes it less since it pulls on all his shaggy hair. So yesterday night he got his very first hair cut, behind his ears is all trimmed and ready for the equipment!




Tonight I am saying goodbye to my quiet baby, who does not coo, or babble or talk. I will say so long to my baby who screams these "break the sound barrier" screeches that so loud my eardrums ring. The funny thing  is, I'm going to miss that baby...

Thanksgiving

What am I thankful for? I think it is fairly obvious but I'll write it anyway. I am thankful for Alex, his cochlear implants and for all the people in his life that made hearing possible for anyone who seeks it. Laying in bed yesterday, after picking up the CI equipment, uncontrollable tears streamed down my face. This whole process is really almost over. Of course after the activation we will have AVT (Auditory Verbal Therapy) which we will take on full force but what I mean is all the 5am morning on the road, the unknown (will he be a candidate, will his MRI and CT scans come out fine) and tons of anxiety will soon subside. What I've concluded about all this is: it will be worth it, it was totally worth it!


On top of that great feeling, today Alex began walking from object to object taking more steps then ever before. He took his first steps in a row wearing his CI processors. What a great moment.

We Have the Equipment!

Yesterday was a good day, plain and simple. We drove to Toronto like we are so used to doing and we actually picked up the cochlear implant equipment. Arriving, we went straight to meet in Gina's office. Gina (one of the greatest people and audiologists ever) was there waiting for us with two HUGE boxes filled with magic. Honestly, I never expected the processor and remote to be so high tech. We truly have a bionic baby. Gina taught us all about the equipment while Alex played and I jotted down two pages of notes.

Then it was to try them on for size. Here is the result:

Alex walking with his processors after the appointment

Dad learning about it all

Ears stick out a little bit because his ears are still small






Side view, I love how is hair is so long !



Trying them with Snug Fit

How did we stop Alex form pulling at them???

BUBBLES!!!!!

Going home with my processors and lots of other stuff!

So now Alex is wearing his processors until Thursday when they finally get ACTIVATED and he will be hearing the world around him.

BIll C-577 and VOICE in the News

As a parent of a deaf child, I wanted to share a few things I am thankful we have as Canadians. The organisation VOICE participated in a press conference on Parliament Hill recently advocating for changes to the Disability Tax Credit criteria. I am in full support for Bill C577!!

"Hearing loss in children is a lifelong condition for which families and the children themselves will suffer increased costs.  The Disability Tax Credit is intended to help offset the additional costs of a disability.  Many of our families have had their applications challenged."

When I was attempting to fill in the paper work for this Tax Credit, we were told by a doctor that many of his patients did not get appoved because of hearing loss. I remember feeling worried and told him I wanted him to fill it in regardless of what his experiences were. He did and we were approved no questions asked. Too bad it's not the same case for everyone.

The existing criteria for eligibility for the tax credit and subsequently for the Disability Savings Plan discriminates against individuals with hearing loss who use cochlear implant or digital hearing aid technology and who have learned to speak. This costly assistive listening technology does not eliminate their disability.  They are, for all intents and purposes, still deaf.  There are many times during the course of their daily living, for example, in water and in noise, that they cannot maximize the use of this technology.  

The following video speaks of many situations in which Alex will not be able to benefit from his assistive technology. Many everyday situations will be a challenge for him. Therefore, I am so glad to see audiologists and other citizens trying to fight for families who are descriminated against. Once again, I am so fortunte Alex's application was not declined.
http://www.youtube.com/watch?v=WtIG7O7ys3w&feature=related
http://www.youtube.com/watch?v=WbyNIzT6KSA

Also in the news,

October 4, 2010 (Ottawa): Today, the Canadian Association of Speech-Language Pathologists and Audiologists (CASLPA) launched its position paper on Universal Newborn Hearing Screening (UNHS) as part of a national campaign to improve early identification of hearing loss in children. CASLPA calls for a Canada-wide adoption of UNHS programs in all provinces and territories.

I am very thankful for this hearing screening. I can not imagine if Alex had not been screened at birth how much more of a delay the entire process would have taken. I might not have even realized he was not hearing until much later. I can't even imagine. I agree that hearing screening should be done everywhere in Canada (which it is currently not). If you would like to read more, the following link is the full article: http://www.voicefordeafkids.com/article_pop.asp?artID=167

Fun at Zooz

This summer we had a seasons pass to Zooz Safari Niagara and we spent a lot of time there. As the season is coming to a close, we decided to take Alex yesterday since it was a beautiful day here in Stevensville. The animals were all awake and moving around. From the first day we went, I was amazed how Alex was so attentive to the animals. He loves when they walk around and make their own quirky movements. He even cracks up sometimes. For example he would laugh at the miniature horses tails wagging, at the swans wings flapping and he especially loves the wolves playing. We love hearing him laugh and just marvel at his instincts at work. His laugh comes out so natural, we forget he can't hear it sometimes.

But at least we see his other senses taking off. When he was feeding the giraffe, his eyes became wide open, his reactions are priceless. He loves touching everything and we know he is learning a lot from sight, touch, taste and smell. Can't wait until his senses are complete. 12 days!!!!