Saturday, March 31, 2012

Brennyn was nice enough to offer me some strawberries yesterday, except she handed me the empty package and said "ha ha, we're porcupines mommy" (she meant porky pigs).

Thursday, March 29, 2012

Perhaps it's time to cut back on the DVD watching

Heard little feet running into my room this morning (at 5:30 in the morning) and Brennyn jumps on the bed saying "wake up Mommy and smell the hummus". My brain is a tad on the slow side before 6:00am so I had no idea what she was talking about. Still made me laugh, again even though it was before sunrise! Later on Avery was kind enough to tell me that "it's from Aladdin Moooommmmmm" (eyeroll included). Both girls also love to quote Vector from the movie Despicable Me. All day long, I might add. It's Avery's favourite movie. Long gone are the days of Toy Story (much to Daddy's sadness, he is a toy story fan). On a side note, just saw that there is a Despicable Me 2 in the works. Avery will be so happy!

Monday, March 26, 2012

Been busy again around these parts. Avery had a birthday party, where she was the only girl out of 15 guests. I must say, she was in her glory (still didn't speak much, but that's the way she rolls). She just feels more comfortable around boys I think, and the boys know that too. This boy happens to be in her class and I just assumed the whole class was invited. Nope, this boy invited all the boys in the class, a few friends of his and Miss Avery. She had a blast!

Brennyn, on the other hand, just thinks she is friends with everyone (adult, teacher, classmate, neighbour, etc).

Tuesday, March 20, 2012

War Amps (and how thankful I am)



These pictures have nothing to do with this post, I just think they are so cute (I know, once again I have to say that I am biased because they are my kids). You can see Brennyn's mischievious side in the top picture. The second picture was taken at the Pioneer Village school house. Grandma and the girls were having fun with the slate boards.

Anyway, back to the purpose of this post. I have mentioned how Brennyn has Ectodermal Dysplasia and her particular syndrome is ADULT syndrome which basically has caused her cleft hand, skin issues, dental issues, etc. Won't go into all the fun medical speak.
I just once again want to say how thankful I am to Sick Kids hospital in Toronto. Don't know where we would be without them!
I also want to say thank-you to the sweet Grandmother we met at the Plastics Clinic at Sick Kids a few weeks ago (she was there with her 12 year old Granddaughter and I really wish I had asked her name).
Brennyn quickly befriended this lady (Brennyn befriends anyone and everyone and I know that screams attachment issues, but I honestly think it's just who she is).
This lady's granddaughter was also missing fingers and was also waiting to see the same doctor as us. The Grandmother mentioned War Amps to me and said how great they have been for her granddaughter. I of course said that I thought War Amps was for children who lost limbs in an accident or born missing limbs. She said that was not always the case and she made me promise that I would ask about the program.
Now, I am a little on the shy side (okay, a lot) and it turns out that we only saw the doctor for 2 seconds and I did not have a chance to ask him. However, when I got home I did a little research and called War Amps. They were so amazing and friendly.
At first they said they were unable to accept B into the program at this point in time, but they would try and match us with a family who had a child with missing digits as well.
An hour later they called me back and said they reviewed B's file and decided to accept her into the program. I was so surprised. We are already registered to go to their yearly weekend conference in May!

I wish I could go back and thank that lady at Sick Kids. I think this will make a world of difference for my daughter!

Monday, March 19, 2012

Finally downloading pictures from my camera

Avery didn't know that her Dad had ordered her a Toopy Binoo/Franklin ice Cream cake. Probably should have cleaned off the table before I started taking pictures, honestly the wine glass was not Avery's.


Avery with her Nana and Grandma!

Saturday, March 17, 2012

We had family pictures done (last summer)


Finally got family portraits done. Neighbour of my in-laws was just starting out in her photography career. Have to say that my Father in Law actually takes really, really great pictures. Now that man could have been a photographer. Not sure why we don't get him to take pictures more often. His pictures are much better.
Anyway, thought it was about time that I actually post an actual picture of our family together!

Also, I haven't had much time to blog, we've been having too much fun over the March Break and enjoying this beautiful weather. It was like being on vacation somewhere tropical, yet we are in the middle of March in Southern Ontario.
I love living in Canada, I swear we appreciate the changes of seasons so much more!

Monday, March 12, 2012

NFED

As I've mentioned before, Brennyn has a very rare syndrome called ADULT (Acro-dermato-ungual-lacrimal-tooth syndrome). This is a form of Ectodermal Dysplasia.
I feel very fortunate to have found this group on the internet, the National Foundation for Ectodermal Dysplasia. It has been a treasure trove of information for someone who feels lost in a diagnosis.

Every year this organization hosts a weekend conference in different states where medical professionals, researchers, and many families affected by ectodermal dyplasias attend. There are workshops, talent shows, etc.
However, the most important part of the conference, to me, is that Brennyn would be able to play with children who also have ectodermal dysplasia.
Not to mention that I would be able to speak with other parents who have children with ED. Maybe I could even find someone who has ADULT syndrome, you never know.

The only down side is that the conference is in Florida this year, and I just don't think we'd be able to fit this in our budget. If I can find some way to swing this, I will. Perhaps I need to start by getting Brennyn a passport (yes, we have been a little lax on that, she's been a Canadian citizen for over 2 years).

EDIT: Wow, who knew flights to Florida were so expensive in July. It's not looking like we will be able to attend the conference this year. Unless I win the lottery somehow!

Friday, March 9, 2012

Sometimes we underestimate our children. Oh, I know, we all think our kids are the smartest/cutest/funniest, etc. However, perhaps we don't always really give them enough credit.

In our situation, my sweet, carefree, happy-go-lucky youngest child is not always as she appears.
I'll be the first to say that of course she isn't always this way, she has a temper like any kid and if she is tired, I mean really tired, she will revert to her behaviours from when we first met her in China (not to the same scale, mind you).

At bed-time a few nights ago, as I turned to leave her room, her little voice asked me about her birth mother. "Whose tummy did I grow in Mommy"? "I know she lives in China, but where"? I had to explain how I don't know who she is, or where she lives in China.
Brennyn said "But you know Avery's birth mommy, so why can't you find my birth mom"? Very, difficult questions to answer, but I tried. What can a parent say, other than the truth. I don't know who her birth mother is. We are trying to search, but it's not going to be easy.

Brennyn has such an innocence about her, so much so that people think she isn't paying attention, or doesn't understand things. She can put two and two together no problem, she knows what's going on. I think people underestimate this girl, and they are going to be very surprised by what she can and will do.

Tuesday, March 6, 2012

Another visit to Sick Kids

Not sure what was going on in The Big City today, but the place was a zoo. We foolishly thought that with our 11:00 appointment we would miss all the traffic. I don't think you can ever beat the traffic to Toronto anymore, a traffic free zone doesn't exist anymore.
Sick Kids was crazy busy today too. I (foolish move number 2 today) saw the LOT FULL sign in the underground parking but ignored it, I mean it always says it's full there but it never really is. Until today! We actually had to pay $5.00 to drive around 4 levels of parking (and we were not the only crazy people to pull into the full lot either, everyone was ignoring the lot full sign) and exit when we figured out that they were not kidding about the lack of available spots.

Anyhoo, arrived at the appointment 5 minutes late (I always am in a panic about being late even though we have never, ever been seen on time. Which I totally understand because it is a busy place). The Plastics Clinic was also crazy busy and we did not actually see the doctor for another 1 and a 1/2.
Oh well, at least Brennyn's hand looks good. Her favourite person (the physiotherapist) made Brennyn a brand new splint and we are good for another 6 months. In 6 months we will be discussing surgery number 3!

Of course, Brennyn made some friends in the waiting room, and I think someone's Grandma wanted to take her home (Brennyn was talking with this lady for 30 minutes, asking her if she was Chinese because she had an accent. She was Italian. I can't make this stuff up, that kid just says what's on her mind).

Once again, I can not say enough about Sick Kids Hospital. Everyone there is always so good to Brennyn, they speak to her on her level. They are so very patient. I just feel so fortunate to live an hour away from such an amazing hospital (even if there is always traffic on our way there).
Next visit is in a month and this time we'll be seeing the Dentist!

Sunday, March 4, 2012

I have one child who is a wall flower (not unlike her mother) and another who no-one can forget. In fact, most people's first comment about Brennyn is usually along the lines of "wow, she has quite the personality".
Avery is the serious one, Brennyn spends most of her time trying to make people laugh (especially if she thinks it can get her out of trouble).
Somehow, though it works for these two. They may be complete opposites (which can be exhausting for Mom at times) but they love spending time together. Of course, Brennyn has wanted to hang with her big sister since day one but trust me, the feelings were not mutual until a year or so passed. Now they really are best of friends, well for the most part. I'd be lying if I said they still didn't fight like cats and dogs, it's just that the fighting portion of their day has gone down dramatically.

On an unrelated note. Today Brennyn said "Mom, I love you". "I think you're a hot chick". Almost fell off my chair laughing!

Thursday, March 1, 2012

Great Wolf Lodge

Let's just say that Great Wolf Lodge was a HIT! Avery did not want to leave that place. She was running up the steps to the waterslides, could not wait to zip down and splash into the pool. I'm sure if they let her, she would have gone on by herself, but she wasn't tall enough. She was stuck with either mom or dad! Brennyn, well, she had a great time too but she isn't a waterslide kind of person.
Nope, Brennyn is more of a lazy river kind of girl. She could have floated on those tubes for hours, with a few breaks in the hot tub thrown in.

Unfortunately, the warm, chlorinated water is not so great for Brennyn's skin, but a long hot shower and tons of cream did help a bit.

I highly recommend GWL as a great family quick getaway! We even drove by Niagara Falls and our Alma Mater, Brock University but the girls did not seem enthused! Perhaps we'll wait on giving them the Brock tour for a few years yet!