Friday, August 31, 2007

Last Trip of the Summer

Kennedy, Ryan, Kyle, and I made the trek last weekend to my sister's neck of the woods in Antigonish, NS for her nuptials. Kennedy & I were both members of the wedding party so I didn't get a lot of "wedding ceremony" pics, but plenty at the reception and from the rest of the visit with her cousins and my sister Tammy and new brother in law, Kevin. Mom, Kennedy, and I stayed on an extra couple days and had a nice visit. It was great to see Kennedy running around playing with her cousins Keith and Kendra, playing at the playground with them, and even getting her hair straightened by her cousin, Kerrin. We don't get together nearly enough.

Thursday, August 23, 2007

Estrofest 2007

We recently began a summer tradition for the female members of my maternal side of the family: each summer, we all go up together to visit my cousin Sherri, who lives in Tide Head, NB (near Campbellton). Graeme dubbed it the "Estrofest" last year when we were all up there. We visit, laugh, talk, swim, play some cards and assorted games (Aunt Lois & I kicked butt on 80's Trivial Pursuit this year woohoo!)., spend time with the kids, and did I mention EAT??? Sherri went way over the top this year on the food scene, next year, we are going to all start bringing some grub so she doesn't have as much work to do (not that we're complaining, she is an AMAZING cook!). This year's Estrofest participants included my mom, her sister (Aunt Lois), her other sister (Aunt Helen), my cousin Angela and her daughter Ella, my cousin Sherri, Kennedy, and myself. Sherri's boys are also in some of the pictures as well, they are Riley & Andrew.

California Pictures

Here are all of our pictures from the California Trip, including the CHARGE Syndrome Conference, and our visit with Debbie, Steve & Anthony, which included a trip to Disneyland (with MacKenzie & Jeanie), Medieval Times Dinner & Tournament, SeaWorld, and the beach (for Kyle anyway, Kennedy was feeling sick the last day, which was beach day, so she & I stayed at home...)

Kennedy's Summer 2007

Here are some of Kennedy's August 2007 pictures - these include a Pirate Party at our friends Connie & Shane's house, and a trip to Liverpool to see Jeanie & MacKenzie.

Exciting News

I've been so busy, I've barely had time to post...why? Kennedy has begun to eat orally; she hasn't had a tube feed since this past Saturday. It's scary and complicated trying to figure out what/how much/textures/etc, but we're learning together and she's drinking 4-5 cans of Pediasure orally on top of the other foods we're getting in so I think we're okay nutritionally.

I got her pediatrician to send a referral to the feeding team to double check everything nutritionally, get tips on introducing texture, and to see if they think we should do another swallow study (last one was age 2 I believe, which she passed but that is a long time ago).

So after 9 1/2 years with a tube, it's a little weird around here, watching her put food in her mouth. I must say, however, that I always said, "she will eat, somehow, to whatever degree she is comfortable with, at some point when SHE is ready..." There were times when I started to doubt after it taking so long, but I always truly believed she would. Wish us luck...

Wednesday, August 8, 2007

Summer Just Got A Bit Busier

I just had a phone call from the hospital - seems they want to send me some more medical students. When they are doing they internship at this hospital, the head neonatalogist, who looked after Kennedy for the first five days before she was transferred to the Children's Hospital, has them go out into the community to meet an actual family, talk to them, interview them, etc to learn what things are like from our point of view. I can never say "no" to this because I truly 100% believe that this type of training is absolutely vital in creating good doctors. I think some of the doctors we had encountered over this nine-year journey could've used a little more training like this. I always have certain things I want to say to them, and I always do - I don't know if it makes a difference but I certainly feel like I'm doing my part to help educate them from the family point of view.

So, in addition to our trip to the IWK Children's Hospital next week for the best part of the week, the trip on the weekend just after that to my cousin's in Campbellton, and my sister's wedding the week after that in NS (of which Kennedy & I are both to be a part of), and shopping for everyone's back-to-school supplies, I need to fit these medical students in somewhere before university & school starts in early September. Wish me luck...

Sunday, August 5, 2007

Videos From the Conference

Here are a few videos I took at the conference, mostly of Ms. Kennedy & Ms. MacKenzie together.

These are all from the dance/carnival on Saturday night. We begin with the girls doing an eloquent version of the Chicken Dance:


We then move on to the Disco portion of the evening with our two little "Dancin' Queens":


Now we have the "Egyptian Twist" - I'm sure Chubby Checker could even appreciate the girls' take on his tune:


A little spinning and a little twirling from our mistresses of the dance:



We end the videos with the "Funky Town Clap-Down" (I think Jeanie & I were both shocked that, given their combined coordination, nobody got slapped in the face during this particular ensemble):

Friday, August 3, 2007

Home

The conference and vacation was great, although Kennedy came back with a nasty cold. We are on hold with the after-hours clinic, hoping to get an appointment as I think she's got an upper respiratory infection. Other than that though, we had a great time and she really enjoyed her first conference. I've posted some pictures from the conference here and there are lots more to come.

More later, still unpacking...