Eyes/Corneas/Colobomas/TV

Sorry about the length of time between posting, folks. Between me graduating from University and starting a full time music teaching job, getting Kyle ready to graduate high school and Kennedy to transition meetings for going to her new, humungous middle school, things have been busy. I'll post more about these events soon. I want to talk eyes today.

Since the last post, Kennedy had a visit to the IWK Children's hospital for ophthamology. They said she is doing fabulous, her corneas look wonderful (surprisingly, they said, with her facial palsy and one not closing all the way for all these years), they gave her a new prescription (minor changes) and took some WICKED pictures of her optic disc, showing her two colobomas (these are the areas in white in the pictures below where there is incomplete tissue development). I am going to post the picture here but also on her main web site as I think it really speaks to the resiliency and ability to compensate that our children display. To think there's that much missing and she manages to see and do as well as she should with not only the vision issues but everything else going on in her little body - well I think it's just unbelievable. Yeah, I know. I'm biased.
Here is a picture of those colobomas (you can click on it to enlarge as well)


During the time we were down there, we had an opportunity to have a visit with dear friends Jeanie & MacKenzie. As some of you know, Kennedy & MacKenzie have been friends since they were babies. MacKenzie was named as this year's Champion Child for the IWK Children's Hospital for the Children's Miracle Network Telethons that take place last week of May/first week of June. She has been quite the little celebrity, on TV, going on trips in Canada & the US, doing various interviews and attending other functions. We are so proud of her and happy to see CHARGE syndrome awareness increasing because of this amazing little girl.

So they had a visit at the hospital as MacKenzie had an appointment the same day, but they also had to go to the TV station for Mac to do an interview. Kennedy was SO excited, asking a million questions, etc. MacKenzie had done enough of this in the past little while that she was as cool as a cucumber. Kennedy was asking, "Do we say 'Action!'?" and telling everyone she was an actress. It was really cute. The director gave her a 'director's' chair to sit in and told her that she would get to say, "Action!" when it was time and he counted down to her. She was just tickled.

After the interview the host of Breakfast Television, Jayson Baxter, took us all around for a tour of the newsroom set for CTV Live at Five and the news at 6, and introduced us to a bunch of folks we see on TV every night. Kennedy thought it was great (so did I to be honest!). I just want to say that the folks at CTV were generous and kind, giving up their precious busy work time to do a little something special for the girls. As we were leaving, Jayson grabbed a camera operator outside and said, "Kennedy, we're going to get you on TV" and taped a short spot with her telling everyone her name, where she was from, and to watch the IWK telethon. It meant the world to her and she was so excited to see herself on TV the next morning.

Here are a couple of pictures from our visits with MacKenzie and from the TV station visit:

Kennedy and MacKenzie - at the IWK, the first place we ever met...


Kennedy & MacKenzie with Jayson Baxter from BT (super nice guy!):


Kennedy & MacKenzie with Steve Murphy, long-time host of the Evening News at 6 (and native Saint Johner):


Kennedy & MacKenzie with Liz Rigney, who works on CTV's Live at Five:

Surgery #20

Well, after a couple of weeks' wait, we made our way to Toronto on the 3rd of May so Kennedy could undergo surgery May 4th early in the morning. We arrived around noon on the third and our good friend Amrit picked us up. We spent the afternoon at his house - talking & visiting while Kennedy played with his son, Aman. It was a really nice time. In the evening, our other good friends Phil & Margaret drove into the city to visit with us at the hotel. After a long day of travel and visiting with friends, we hit the hay early as we had to be at the hospital at 6am.

Around 8am, they took Kennedy into the O.R. - I accompanied her inside until she was 'out'. About 2 hours later, the doctor came out to tell us that things were done. It didn't go optimally because he was hoping to be able to fix the original abutment that got kicked in the schoolyard. Unfortunately, when he tried to straighten it out, the whole thing fell right out of her skull. He warned us that the gap that was left looked like, "the grand canyon". He said it was extremely rare for him to see something get hit that hard to be knocked out of someone's skull after having been there for three years. This was upsetting to us to imagine the trauma that her head took from that kick to dislodge it so completely. So, he ended up having to bring the spare screw up that was implanted in 2005, put a new abutment on it, make a skin graft to cover the big hole and insert a new back-up screw. It was quite a bit more involved than we'd hoped. The good thing is that Kennedy bounced back in her usual super-girl fashion.

She has a large foam pad and a healing cap on until Wednesday of this week but overall, she is in good spirits and able to hear somewhat with her softband hearing aid on until we can use the new abutment.












We actually took her the next day to the Ontario Science Center as we had the whole day before flying out at 8:20pm and she was feeling well enough. She had a great time. I have posted all the pictures on Facebook, but for those of you who don't have it, here are the public links to our Toronto albums:

Toronto Album 1
Toronto Album 2

Thank you to EVERYONE who kept us in their thoughts. It certainly was not the best outcome and it's upsetting it had to happen at all but at least she's doing okay and hopefully there will be no further complications from the added work that needed to be done to her head.

Schoolyard Accident - Take Two

Well, it's spring so time for another installment of phone-call-from-school-because-Kennedy's-hurt-on-the-playground. Except, this time, it's much worse than last year's broken arm incident.

This past Wednesday morning about 11am, I had just picked my father up after his surgery at the hospital to take him home. We were on the way to his house when my cell rang - it was the school. Kennedy had an accident outside and her hearing aid got knocked off; they were still trying to locate it. I thought to myself, "Well they better find it, the darn thing costs thousands of dollars." They said she was fine but asked if I could come over. I asked Dad if he was up to it and he was, so we turned around and headed back to K's school.

When I got there, they reported they had found her aid, which had landed inside her coat. I was relieved for an instant, until I pulled up her hair that covered the area where her implant goes. The titanium screw that is affixed to her skull to hold her hearing aid implant on was driven back out of its normal place and dislodged halfway from her skull. It was a bloody mess. I had to sit down, not from the blood, but from the immediate sinking sensation that I knew she was going to have to have surgery to fix this. I'm just so glad she was in good spirits (thank goodness for high pain thresholds). She asked if she could put her BAHA back on and I signed/said, "No, we need to call the doctor first to see if it's okay." Then, the floodgates opened, "I DON'T WANT ANOTHER SURGERY MAMA!" she gasped in between sobs. My heart was breaking for her. I don't blame her a bit; after 19 surgeries, she deserves the right to be upset at the prospect of another.

We did eventually get her calmed down, got home, cleaned the area well and called the surgeon in Toronto who'd implanted her BAHA back in '06. He called back and said to keep it covered and the earliest we could get in was May 4th for the O.R. We also have to put her on an antibiotic for ten days because of the risk of infection and keep it covered, especially at school. We dug out her old softband (headband that the BAHA can snap onto, usually worn prior to BAHA implant surgery). Her BAHA started 'buzzing', however, so we had to send it away and wait for a loaner to arrive. So no hearing at all for the weekend until the loaner arrives on Monday.

Now, Graeme and I are planning on an unexpected trip to Toronto on May 3-6 now for surgery to have it fixed and the area on her head closed. For those of you who don't know the geography - Toronto is 18 hours away from us, so we need to fly, etc. It's very stressful figuring all of this out, with it being an unexpected trip to Toronto and worrying about infection between now and then, etc. I know I am biased but I would not think it was good judgment to have three other kids spinning her on a swing (doing a 'twisty') with about 200 kids running around. Someone's foot came up and hit her in the head (obviously pretty hard to dislodge a titanium screw/abutment from its place that's been there for 3 years). I know accidents can happen but I think sometimes Kennedy is overestimated in terms of safety and she shouldn't be; between last year's broken arm and now this much more serious injury, I think it's time to go in for a little chat about safety, etc with the school. Just one more thing to do.

Anyway, we are plugging along and Kennedy is doing very well, she is much less worried than we are...

Almost April

Time for another long-overdue update, I can't believe it's been so long since I've written. It seems like I get (or make) time to do this about once every 3-4 weeks, I'm not a very good blogger. Things are going well around here - Kennedy is getting toward the end of grade five now and getting psyched for middle school. The biggest issue right now is what school she's going to be attending. The one she is slated to attend is up on the chopping block to be closed but the government has not made a decision yet. Apparently we're supposed to know by next week. I don't really have a strong opinion either way. The one she will attend if the original closes is closer in proximity to our home, but will be HUGE in terms of student population; the other is in an area of the city that is really rough and known for drug busts, etc. The school, staff, etc, is good, it's just the periphery that is worrisome. We shall see and whatever happens, Kennedy will adjust and do well, just like she always does. I always worry more than is necessary, but I'm getting better.

March has been fairly uneventful - she's had lots of school work and projects to do so that's kept her busy. This Friday she has two big projects due: one on floods and a 'Wanted' poster for a character in a book. She has been working hard on those. I have been supply teaching a lot and also got a second interview for a teaching position at a private school so I've been preparing for that this week.

In March, Kennedy also went to the endocrinologist, who found she was happy with her growth in terms of height (that had been a concern). She still is around the 5th percentile for height but has remained on her own curve and her growth velocity per year is fine. Other issues we are watching for now involve puberty; we had a blood test done to look at some things so hopefully all will be moving along in that area when her body is ready.

Last night we had a family date to go see Monsters vs. Aliens, which was very cute. Kennedy actually let me dry her hair with a diffuser to really bring out its natural curl. Since it happens so infrequently, I captured the look with my camera. Here are a few shots - I love her curly hair! She is wearing her favourite shirt in these photos - it's her grade five graduation shirt from her school. They have a tradition of having everyone sign their name and putting it on the back of a t-shirt in the year of graduation, with the school crest on front. Cute keepsake!

Front view: my little girl is growing up.



Back view: I love these curls!


Side view: Little button nose :)



Typical pose: I wish Kennedy would open her mouth and smile more for pictures but she has it in her head now to keep her mouth closed. It's still adorable, but I miss her open-mouth smiles. At least she lets me take pictures, I remember my boys did NOT like getting their pictures taken at this age!

Another March Break has Come and Gone

Random musings on March Break '09...

Well today is the last day of March Break. Kennedy had a fabulous week - the first weekend of March Break we had Taylor home all to ourselves for the weekend for the first time without her Mom & Dad. I had a ball being the doting Nan and Kennedy loved helping out with everything as the ever-loving Auntie. She helped me give her baths, feed her, hold her, change her bottom, play with her. It is so beautiful to see the two of them together. I am so proud of how responsible she is becoming.

On Monday, she began to go to theatre camp. She asked to go for the whole week so we signed her up and she went on her own each day. There were different themes for the days, such as 'Broadway Bound' and 'High School Musical'. She came home so happy and excited every day. It was not as fun for me as we usually have the whole week together and didn't this year but she's growing up, expanding her interests and I think it's great she wants to do other things.

We did catch a movie together on Tuesday night: Jonas Brothers 3D. It was a lot of fun; those boys have a LOT of energy. Kennedy loved it! Friday night, after theatre camp was done for the week, we had a girly spa & movie night, complete with a full massage, bubble bath, manicure, and movie. Oh yes, we also had fun playing 'Guitar Hero: World Tour' together. Graeme actually joined in for that. Kennedy's score beat ours almost everytime, no matter if she was on drums or guitar. She loves that game so much and is so cute to watch. She is her mother's daughter - loves the 80s music - we often hear, 'Eye of the Tiger' and 'Beat It' pounding away down there.

Yesterday (Saturday) was a cooking day, she wanted to make cheesecake so we spent the afternoon doing that. In the morning,though, we had to go out and do a few errands, one of which included going to Home Depot to pick up a small light switch. I wish I'd had my video camera because Kennedy began giving us a guided tour of Home Depot. She would walk us over to the kitchens and say, "This is the cupboard, these are some lovely drawers," etc...and would open them and point just like she was little Miss Saleslady. It was so adorable.

On another somewhat related topic, something she is doing a LOT of lately is asking us, "What will I do if I work here when I am older?" She does this at almost every new place we go; she has a real curiousity about working and having a job. She is very excited about this. We spend a lot of time talking to her about different responsibilities of different positions. She thinks she might like to work at the hospital where people register - you give them your Medicare card, they enter your info in the computer and then tell you which way you need to go to get to your desired destination. I think she'd be great at this (or whatever she sets her mind to). She certainly knows her way around the hospital and is excellent on the computer. Time will tell, I just want her to be happy in her life no matter what she does.

Last note about March Break '09 - K got a cheque for Xmas this year that had been sitting on a shelf in our kitchen for going on three months and we decided we better get it cashed. So Kennedy opened her very first bank account yesterday, learned all about getting an account, how much she could take out in one day, got her new bank card, selected her own PIN for the account, asked questions of the bank manager who set up the account, etc. It was happy and sad at the same time - happy to see her taking in the information, getting more independent, but sad because my baby is growing up!

Back to school tomorrow - I'm not scheduled to work tomorrow yet so that's a good thing as Kennedy's big brother, Kyle, is coming home from his high school trip to France at about 1:00am. She is excited to see him as am I - can't wait to go pick him up tonight, Kennedy will have to wait until the morning to see him, though as she does need to wake up for school!

Hope all of my readers had a great break or will have a great break if you haven't yet had it!