HAPPY BIRTHDAY

July 1st is not only a birthday for Canada, but also for a very special little girl.

HAPPY FOURTH BIRTHDAY to our sweet, lovable, cuddly, brave and curious Brennyn. I hope you will always be so optimistic, happy and trusting.

You are getting so, so big (as you like to tell every person we meet)!

We love you so very much, and are so happy proud and blessed that you are our daughter.

End of school

Avery has 3 more days left of Junior Kindergarten. It feels like it was yesterday when she was waiting at that bus stop for the first time, in September.
She also will get her first ever report card tomorrow, Avery doesn't even know what a report card is.
Avery is just excited that school is almost over. She wasn't a big fan. The learning part was great, I think socially, things were a little difficult for her. Here's hoping next year is a little easier for my girl.

EDIT: The top photo was from the first day of school, and the bottom is from the last day!

Love the hand on hip pose.

Who knew how difficult it would be to get 2 girls to look at a camera at the same time (or even sit still together). Brennyn was trying to give her favourite sister a hug. Her favourite sister, isn't so into hugs these days..

The water was freezing, but that didn't stop Avery, she thought it was just perfect for swimming! Too bad mommy wasn't crazy enough to go in with her, so she was stuck hanging in the surf (she had a blast).

Technology amazes me

Or I should say, the internet amazes me. I was googling Brennyn's genetic syndrome (there isn't much out there, let me tell you) when I came across a scientific case study completed in Guangdong, China. The author/researcher completed a paper on a patient suspected of having ADULT syndrome (they aren't able to do the genetic DNA testing in China at this point in time, so they can't without a doubt prove that this person has the syndrome). The paper states that this patient is the first known case of ADULT syndrome in China (although, I am sure there are more, but the people affected wouldn't know they have it).

I decided to e-mail the author of the study, assuming that I would never hear back. Firstly, the study was published in 2006, secondly, the Scientist/Doctor lives in China.

You can imagine my surprise when, 2 days later I got a response. Have I mentioned how much I love the internet/e-mail/technology!!
He mentioned how rare her syndrome is, and if his research could help in any way to let him know. On the flip side, he is also trying to learn as much about this syndrome as well.

Chilling in the back yard

Avery found her long lost goggles, as you can see in the picture. Both girls love their swingset. Blair found it at the end of someone's driveway and he spent a week sanding/painting and repairing it. That set doesn't owe us anything. I'm not kidding, the girls spend hours on it!

Overdue pictures

Third dentist in 1 year

Second visit to Sick kids this week! This time we dragged Grandma down to the big city with us. We met with the pediatric dentist yesterday.

First, we saw the dental student (not sure if student is really the correct term, because she was a dentist but must have been doing a residency in pediatric dentistry). Anyway, she thought Brennyn's teeth looked really good (since the 6 cavities had already been filled by our dentist). Yes, she does have enamal problems and her teeth are a different shape but they looked nice and clean, etc. She thought that we could just continue to see our regular dentist. However, she had to run out to double check with the dentist on staff, which should only take a minute (guess that means her preceptor). 15 minutes later, the staff dentist came in and re-examined Brennyn. Again, she said her teeth looked good, all things considered. She asked again why Brennyn was referred to Sick Kids. This time, she said that it was up to us, but Brennyn does meet the requirements to become a patient there. We could continue to see our dentist if that was easier and be referred back to Sick Kids when (and if) there is a problem. I decided that, yes, it's a long drive just to see a dentist every 6 months, but it's worth it for Brennyn's health. For them to offer her a spot at the sick kids dental department, made my answer easy. Yes, Brennyn has another new dentist.

Last day of Teddy Bear school

Who knew I'd get all choked up at Brennyn's Teddy Bear school graduation.
I think part of it was that my baby is going to be starting Kindergarten next year. Also, Avery went to the same program for 2 years and Brennyn 1 year, I'm very sad that my children are finished.
The teacher was asking if we'd have more children, because she will miss our kids. We will miss her, that's for sure. I can't say enough good things about this program, what an opportunity for the high school students and for the "little buddies".

It was so cute watching all the little ones singing their songs with the big buddies. Brennyn was more concerned about the cupcakes and snacks after, but she still managed to sing a song or two!
I really, really wish I had thought to take a picture of her with cupcake icing all over her face, it was so cute. She was covered from her nose to her chin!

Soccer

Some of the pictures may be blurry (it's hard to take a picture of a constantly moving, laughing child).

I guess I must love that one picture so much because I posted it twice!!

Beach season is here again

Not exactly swimming weather yet, but perfect sandcastle building conditions.

Oh, and don't these two look sweet hugging each other. Wait, don't be fooled, Avery is in the process of picking her sister up (even though Brennyn weighs 2 pounds more).

I've been thinking about this post for a long time.
Our spunky, cuddly, beautiful, and curious daughter, Brennyn was adopted from the China waiting child program.
Her original "special need" in the referral package from china was listed as syndactyly, polydactyly and missing digit.
The diagnosis from Canada is slightly different (and I'm being sarcastic because it's very different). She has syndactyly and cleft hand, along with a genetic disorder called ADULT: Acro-Dermato-Ungual-Lacrimal-Tooth syndrome(a form/combination of ectodermal dysplasia). I have no idea where the polydactyly came from because there are no extra digits.

Now, they certainly would not have suspected a genetic syndrome like this in China, because the number of people with ADULT syndrome in the world is in the 100's (if that many). Brennyn is Toronto Sick Kids first patient with this syndrome. The Geneticist did not seem to think she had this, until the DNA/blood test results came back from the lab in the USA.

I'll admit it, I am so thankful that Brennyn is here in Canada. How would she have been medically treated in China?? Would she have been able to see a dentist at all? A skin specialist and optometrist? What would her life have been like? We are lucky to have great medical care here in Canada. However, not everything is covered such as skin treatments, dental work (we have a great dental plan though), some medical treatments and prescriptions (again, good work medical plan). I often wonder if someone in her birth family has this condition, the odds are 50% that one of her parents has some form of this syndrome. They probably don't even have a diagnosis!

I am also thankful that my agency was able to prepare us that there was more to Brennyn's referral and medical information than what was specified. Our agency has been given a bad rap lately (and I'll be the first to admit it is for a darn good reason) but their Waiting Child co-ordinator was great. She was there for us while in China, and she was there for us when it was time to make that initial decision. She did not pressure us in any way to say yes or no to Brennyn's referral. In fact she told me in no uncertain terms that she was there to find this child a home, the right home and that there were a lot of unknowns with her medical info.
She wouldn't even let us see her referral pictures at first. We were only given her medical information to read over.
She also put us in touch with a doctor at CHEO (in Ottawa) who answered our many, many questions to the best of her ability (and even passed the medical info to a few other specialists at CHEO). In the end, I did ask to see her picture before we made our decision.
I will also admit that we did take some time to make our decision (this was back when our agency was given individual lists of children's files from the CCAA).

Is it going to be an easy road for my daughter, No. She has at least 3 more hand surgeries to go through, countless appointments with 4 different specialists and the unknowns of having a syndrome that no-one seems to know that much about. She is going to have to miss a lot of school as well over the next few years for medical appts. and operations.

I just hope she knows how much we love her for who she is. She is the spunkiest, crazy kid around and I love her personality. She charms everyone she meets. Don't get me wrong, she can be challenging at times (like when I can overhear the gymnastic coach saying "Brennyn, if you don't stop XYZ, you're going in a time out" for the tenth time), but I don't want her to change at all! I am so very lucky to be the mother to this little girl. She is so curious about everything, and just wants to explore the world. She doesn't care if you are a kid, adult, animal, she wants to hang out with you and make you happy! She has such a big, happy heart!