EMNS Middle School Sign Language Club Holiday Concert Performance

Kennedy with her Sign Language Club, performing "Mary's Boy Child"...you'll notice she's the one to give a big bow, wave to the crowd and make a 'heart hand' to them. No shyness here...;)

For those of you not on facebook, here is the link to the youtube video:
http://youtu.be/6xlp2NO52R0

Enjoy!

Empty Stocking Fund 2011

Here is a video of Kennedy singing with her choir on TV this past weekend - they sang, "Somewhere in My Memory" (from Home Alone). This telethon has run each year for the past 75 years in Saint John to raise money to help families give their kids a xmas when they might otherwise not have one. I was also on the telethon with choirs when I was her age - glad she is continuing the tradition. This is a video her dad took while we were there live. She's the first one on the bottom row on the right... Enjoy!
PS - it does zoom in after a bit so you can actually see her better!

Kennedy Channeling Sally Brown

Thought I would share this video from last night's theatre class - the parents were invited back to see the little thespians perform monologues at the last class of 2011. I also thought I better try for at least one more post before the end of 2011 - it's been sparse this year! Not that we haven't been doing too much, I have just been doing too much, that's the problem.

Kennedy's monologue is a classic piece from The Great Pumpkin, where Sally rakes Linus over the coals for making her miss out on Halloween. Here is the text so you can follow along if your audio isn't the best:
Sally Brown: I was robbed! I spent the whole night waiting for the Great Pumpkin when I could have been out for tricks or treats! Halloween is over and I missed it! You blockhead! You kept me up all night waiting for the Great Pumpkin and all that came was a beagle! I didn't get a chance to go out for tricks or treats! And it was all your fault! I'll sue! What a fool I was. And could have had candy apples and gum! And cookies and money and all sorts of things! But no, I had to listen to you! You blockhead. What a fool I was. Trick or treats come only once a year. And I miss it by sitting in a pumpkin patch with a blockhead. You owe me restitution!

Kennedy is an Auntie again!

Last Saturday at 2:59am, we welcomed little Seth into the world. Auntie Kennedy was very excited to see him on Friday and hold him for the first time.

Winter Carnival 2011

To update my last post, Kennedy's appointment was canceled at cardiology because of her bad cold/fever. We will see them again in June hopefully. I will be sure to update everyone after that appointment is over.

Last week was Kennedy's Winter Carnival at her school and on Friday, which was also 80s Day, there was a Gong Show in the afternoon. Kennedy choreographed and practiced her heart out on this dance number - she didn't get a single gong! She brought down the house. Now to continue practicing for cheer competitions, her spring theater performance and of course, CHARGE Conference Idol 2011!

February is for Hearts...

Well it's that time of year...or I guess I should now say, every-other-year. It's time for Kennedy's cardiology check-up tomorrow afternoon. She's done so well over the years that she has been reduced to being seen only once every other year, which is a great thing. She has been home from school today with a fever and cough so I'm hoping she is okay to make it and we aren't deferred, especially since she only sees them every other year now.

The routine begins: a letter arrives from the IWK Health Centre with instructions: "Kennedy will be seen on February 23rd, 2011 for a cardiology appointment. She will also have an ECHO before the appointment. Please arrange for an ECG at least two weeks before the appointment." She had her ECG a few weeks ago and tomorrow will be the ECHO and the general cardiology appointment with the IWK travelling clinic. I'm not anticipating anything major but history has taught me that I need to be prepared...

When she had her first open-heart surgery at 9 days old, we were in the shell-shocked stage still. Too stupefied to truly realize what was happening. I thought, though, that when that was over. One thing to check off the CHARGE syndrome list: we were done with heart issues except for regular check-ups. Sometime in late 2003 when she was five, however, during one of those regularly scheduled check-ups, I got hit by a Mack truck blindsided by the clinic doc who nonchalantly told me, "Yeah, so we're looking at another surgery in a few months for..." Needless to say, I don't remember much of the rest of that appointment. In fact, I remember driving to a nearby park and, after arriving, I couldn't remember driving there at all. My mind was just a numb blur of astonishment. I just kept thinking, "Another heart surgery? What? We were done with that part four years ago! That part was before choanal atresia surgeries, before hearing aids, glasses and eye patches, before gastric feeding tubes and Nissen fundoplications. This was just supposed to be an in/out/forget-about appointment." My mind was whirling but I did manage to get myself together enough to call a friend who lived near the park and carefully drive us over there so I could continue the murky journey back to coherence. Nobody had ever told us there might be a need for a second surgery so it really did throw my naïve brain for a loop.

The second heart surgery was definitely harder for us because Kennedy was so much more 'knowing' at that point. She fought tooth and nail going into the O.R. and even whacked me in the face because she was so upset. But, in true Kennedy fashion, she came through the surgery just like she always does and we got through it too - after a month away in Toronto for everything that needed to be done (cardiac cath, two-week wait, and surgery.) After that surgery, the surgeon did tell us there might be a possibility of her needing another surgery at some point in the future.

At her last checkup, I spoke to the IWK cardiologist about the possibility of another heart surgery and he told me that things looked really good and that it wasn't definitive that she would need one, which allayed my concerns somewhat. I had been operating under the assumption that it was just a matter of time. Nevertheless, each year, I wonder if I'll hear the news I don't want to hear, or if we will once again coast under the radar with a healthy check-up and go on with the status quo for another two years until the next appointment letter arrives. I don't dwell on the what-ifs because it just isn't productive in the day-to-day hustle and bustle of our lives but this particular every-other-year appointment does make me stop and consider the possibility of another what-if.

So, with all that being said, do me a favour and please keep a very special & precious heart in your thoughts tomorrow and hope we get to coast for another couple of years.

Ponto!

Since Kennedy was six, she has had a BAHA Divino hearing aid implant. She has done fairly well with it, however, it has required many repairs to the tune of almost $600 each time. Seeing as it is getting to be almost seven years old, we began looking into replacing it last year. I was informed by Cochlear Canada that they will no longer be making the Divino and it will be hard to get parts for, etc. in the near future so it became a little more important for us to find something sooner rather than later.


So, we learned about their new BAHA, which was originally called the BP100, then the Baha 3 (the names are still interspersed at the website so I'm not really sure what it's supposed to be officially called now). We were happy to learn it would be programmable, instead of just boosting everything straight across, we would be able to customize it to her individualized hearing loss. There were also other improvements, such as GORTEX moisture protection, for example. We secured a BP 100 loaner for Kennedy to try last year and, unfortunately, we did not like it at all. Both the audiologist and myself had trouble getting it turned on - not a good sign when both an audiologist and a teacher for students who are deaf/hard of hearing find the turning on of a hearing instrument to be bizarre and inconsistent. Unlike the Divino, the BP100/Baha3 also did not have a volume dial, so Kennedy was unable to adjust her own volume, which she does quite frequently, depending on the situation. She did not hear better with the BP 100 or the Baha 3 (we tried both of these) but Cochear reports on their website that in their study, "patients showed better hearing in noise, using a Baha 3. The average improvement was equivalent to about 25% better performance than with their Divino listening with both ears." Another strike against the new BP100/Baha 3 was that the configuration of the three-pin electrical input designed for connecting external equipment was changed on the bottom of the BP100/Baha 3 to "Europin" design, which was different than the Divino. This meant that the accessory connector we paid more than $300 for with her Divino and that she uses daily, would also have to be replaced. Also, her receivers for her FM at school would have to be replaced. Difficulty with working the buttons to turn it on/off and operating the volume control meant less independence for Kennedy and more frustration for us; this coupled with the fact that we would have to replace other needed equipment led to the decision to hold off because we had heard that in November of 2010, there would be a new BAHA product available in Canada through Oticon.

In late December, we got a loaner Oticon Ponto and Kennedy has been doing great with it. We find she is hearing very well with it and her teacher for students who are deaf/hard of hearing reports that she notices Kennedy is not asking her to repeat herself at all since she got the Ponto. We have tweaked the settings a couple of times with her audiologist to get it just right. The audio connectors are the same as from the Divino, so she has been able to try it out with the computer/iPod as well and likes it. The number one reason we have been thrilled with the Ponto, though, is the level of independence Kennedy has been able to achieve with it. For the first time since she was six years old, Kennedy can put her own BAHA on herself! The design of how the Ponto fits onto the abutment is different than the Divino. Whereas you had to get a small rim into the inside of the abutment with the Divino, the part that goes onto the abutment on the Ponto is bigger, to fit 'around' the abutment. This was huge in terms of her independence. Not only could she put it on herself, all you have to do to turn the Ponto on is put the battery in and close the battery door! No pushing and holding buttons and waiting for beeps multiple times, just put the battery in and it's on. She is also able to operate the volume control very easily. She can put the accessory connector on and off herself so when she wakes up early and wants to listen to Justin Bieber on the computer or iPod, she can get the implant on, attach the connector and adjust her own volume. YAHOO! One last bonus in my opinion for the Ponto was its design. It's not square/boxy, but a nice, teardrop design. While it doesn't have the same colour options available that the Baha 3 does, the chroma beige colour fits in really nicely with K's blonde hair and I do like the shape of it quite a bit better.

So for us, the Ponto is the way we're going to go. We are looking into funding options at the moment so we can order one. I know a lot of people will do well with the new Baha 3, but it really was just not for us. When you're 13, you want optimum independence, so that's why we are going with the Ponto. It's nice to have a choice now - with behind the ear aids, there have always been multiple options, but with BAHA, there has been only one for a long time. Thank you Oticon! :)

A Well-Deserved Snow Day

How fortuitous to wake up this morning, the morning of Kennedy’s 13th birthday, to learn it would be a snow day. This meant both she and I would be staying home together today. I think it is a well-deserved snow day and only fitting, given the events of her original ‘birth’ day – January 27, 1998.

We were living in Pennfield at the time. It was just a few short weeks after the horrific ice storm that crippled much of Ontario, Quebec and the Atlantic provinces. It was said that the ice storm of 1998 “directly affected more people than any other previous weather event in Canadian history.” Like that ice storm, another January event would forever profoundly change the course of our lives.

Knowing how quickly I had delivered my second child, Kyle (about 50 minutes start to finish), and knowing we lived about 45 minutes from the hospital, we had planned to come up to Saint John to stay with Graeme’s grandmother within a week of my due date. Kennedy, however, had other plans. She decided to make her entrance thirteen days early.

Graeme and I had settled in to bed on the night of the 26th, where we both slept soundly until about 4:15am, when I awoke with the need to use the washroom. Seeing the tell-tale pink when I was finished, I summoned Graeme with a, “You need to get up NOW!”. We prepared ourselves quickly and made our way, excitedly and apprehensively, to the car.

Believe it or not, we both remained as calm as the still dark night we were driving through on the way up to the city, despite the dwindling amount of minutes between my contractions. We made it to the hospital and my doctor was called. We were pleased he was able to make it before she was born. I believe his familiar and calm presence was one of the things that helped us through what was to come.

The labour was going very well. I was very calm, concentrating on my breathing with a musical, back and forth, conductor-like hand movement indicating the commencement and conclusion of each contraction. Graeme held my hand and comforted me throughout each one. The nurse remarked that he and I should give lessons. We all had a laugh about that. One oddity occurred that neither Graeme nor I thought much of but, I am sure, alerted knowing hospital staff that something may be not quite right. When my water broke, it kept coming. And coming. And coming. It was like Niagara Falls compared to what I’d experienced with my other two babies. (it turns out this condition, polyhydraminos, aka “lots ‘o’ water”, can be an indication that there are swallowing issues that have been present in utero ).

6:59am. The moment arrived. That moment that is simultaneously terrifying and exciting. It’s like the feeling you get as you inch up to the top of that first incline on a rollercoaster and prepare yourself for the crazy ride that will ensue once you’ve reached that apex. There’s no turning back now. And so, with very few pushes, our beautiful baby girl made her grand entrance into the arms of my family doctor. We held our breath and waited. Nothing. The only sounds in that small contrived-to-look-homey room were the scrambling noises of the nurse and my doctor as they whisked her over to a little table and began to work on her. To their credit, they were incredibly calm and reassuring, given the fact that the baby in front of them was cyanotic, her skin getting darker and darker before their eyes. “We just need to clear her nose out.” Then, “We’re going to take her down the hall to get her nose cleaned out”. That was the last thing I remembered hearing.

A half hour or so later, Graeme helped me up off the bed so I could get cleaned up. I was still laying there in the same position I’d been in since she was born. I was dressed and sitting up on the bed. We called a few people to give them the wonderful news, “It’s a girl!” “Yes, everything is fine, they are just cleaning her nose out. There was a lot of vernix. Yeah, you know, that white, thick gunk that’s all over babies when they’re born.” As the minutes passed, though, we looked at each other, still cautiously optimistic, still blissfully ignorant, but wondering what was really going on and when they’d bring her back to us.

We eventually were taken down to a room on the floor, out of the Labour and Delivery Unit. The minutes seemed to take forever as we waited for word, all the while listening to the ebb and flow of the busy floor: nurses bringing babies from the nursery to parents, babies crying, and parents caring for them.

We finally received news sometime around noon, or maybe it was a bit after that. The day from that point on becomes a little blurry for me to recollect. It seems their attempts to pass a catheter up her nostrils to clean out her nose were futile. She had a condition called ‘bilateral choanal atresia’. I remember spending much of the afternoon worrying and crying. Crying because I didn’t know what the future would hold for my beautiful daughter, crying because there was something wrong that I didn’t quite understand, crying because I’d given birth 6 or 7 hours ago and still hadn’t seen her and crying because I couldn’t even pronounce the name of the darn condition the doctor had told us.

Late in the afternoon, we finally got to go down to the neonatal intensive care unit to see her for the first time. There she was. A big, 7lb 14 oz baby, looking so huge in the little incubator next to all the preemies around her for whom the incubators were designed. She had a large black contraption in her mouth to keep it open so she could breathe from her mouth and was hooked up to what seemed like a zillion tubes and electrodes. Yet, despite all the hospital paraphernalia, she was our beautiful baby girl. I knew, in that moment when we first laid eyes on her, that our lives would be forever changed but I also knew that we would love her more than any words could ever express. We would go to the ends of Earth and back for her. No matter what was to come, we would get through it. And we did.

Fast forward to today: it is January 27th, 2011 and we have reached yet another amazing milestone. Kennedy is a teenager. She has survived 20 surgeries, hundreds of appointments and tests, hours and hours and hours of therapy and remains one of the happiest people I have met in my entire life. She is a cheerleader. She is an actor. She sings and dances. She gives speeches. She runs and jumps. She loves movies. She loves games. She loves the Wii. She loves Facebook and chatting with friends on the computer. She loves Justin Bieber and Glee. She loves her cell phone and her iPod. She has done so much more than we could have ever possibly dreamed on that very first day. She has an exuberance for life and energy that would lift the spirits of even the most cantankerous curmudgeon.

And so here we are. It is a snow day. I am a teacher and Kennedy is a student. We will be together all day today, which I feel is most deserving, considering the amount of time we spent apart on her very first day.


It is truly a gift to be her parents. She makes us happy every day.

We love you, Kennedy.
Happy 13th Birthday.