Family Conference

Thank-you, thank-you, thank-you to the NFED for hosting a fabulous family conference. I thought I had researched and knew as much as I could about Brennyn's genetic syndrome, but boy was I wrong. You can never know too much or do enough research.
Brennyn spent three days in Kids camp, which was staffed by local ECE and teachers. The ladies (and gentlemen) were amazing with the kids. Unfortunately, the room was a little tiny for the amount of kids, which made things a little overwhelming for B. Brennyn's helper was so intuitive, she would take Brennyn for breaks throughout the day, and that was without me even mentioning anything.
The kids met some animals from the Columbus zoo, Ronald MacDonald, a fancy magician, etc. To sum it up, Brennyn had a blast! She met a few kids with similar syndromes, which was the main reason for attending the conference.

I was able to meet with a few doctors, a researcher (who has never met anyone with ADULT) and a dental specialist. I sat in some seminars, highlights being school issues, dental, women issues, genetics, etc.

The staff at NFED are tireless supporters of all the NFED families. I have never felt so welcome.

Anyone out there who is effected by ectodermal dysplasia should try to attend at least one family conference. Doesn't matter what country you live in, the information crosses borders!

NFED Family Conference

We are very excited to be attending our first ever National Foundation for Ectodermal Dysplasia family conference this week. Brennyn and I (along with my mom) will be driving to Ohio to hang out with a few other families with Ectodermal Dysplasia (by a few, I mean over 400 people). I am over the moon with excitement. I am hoping to meet another family with a similar syndrome to Brennyn, and am happy that Brennyn will have a few days to hang out with other kids with a similar diagnosis.
Did I mention how excited I am!

The 6 hour drive may not be fun, but it will be so worth it.

I probably should not be sharing this on a public blog, but I think it's important to discuss the not so rosy sides of life. Some of you may know me in real life, and this may not come as news. We have had a few issues with our sweet B over the years. We have also been trying to get the right help for little Miss B for years. Well this year in grade 1 some of these issues really blew up.
We knew she wasn't happy at school, and we tried for a month to get her to talk to us. Finally, one day shortly after Christmas break she started to cry, and she sobbed for over an hour. She felt lonely at school, and some kids didn't want to play with her anymore, etc.
Her friends would come up to me from time to time and say how funny B is, but that sometimes she was just "too crazy". My heart broke.

I was able to meet with her teacher (whom, it turns out, also had a few concerns) and she made it possible for B's file to be seen by the school SW, resource teacher, principle and CYW. They had a meeting and the ball finally started rolling.
B now has sensory breaks twice a day, some sensory items and best of all, AN IEP. I am ecstatic about the IEP, because although this girl is a smarty pants, socially she needs some help. Sometimes she just gets overwhelmed, or she needs a little help transitioning to the next task. I am happy with her school. They are trying to help us. Of course, I also think that Private school would be better for B, but we just don't have the funds for that option.

At this point in time, B has been diagnosed with inattentive ADHD. I still feel like there is more going on, but it's one step at a time here. At least I feel like people are starting to listen to us.

Happy 7th Birthday

I'm behind on posting, but a very happy 7th birthday to my sweet, colourful girl. Hard to believe you are 7 already, where does the time go? Some days are a challenge, but I would not change you a bit. You march to your own drum, and I have a feeling that's never going to change. You've changed our lives baby girl, and taught us so much. There is no-one like you out there, and don't let anyone try and fit you into their mold. You are you, and we are so very proud to call you daughter. I am the lucky one.

Big events happening around here. Avery had her first communion in May. Now, I am the only non-Catholic in our family so my lack of experience leading up to this event was obvious. Good thing my MIL was here to save the day. She generously bought Avery her beautiful dress (I would have purchased something from Bonnie Toggs or Children's Place, so that should give you an idea of how little I know when it comes to formal occasions and the church, lol).
The girls also had their hair done at Nana's salon the morning of the big day. Now, Avery was not so keen on this idea, but Brennyn was delighted. She and Nana are two peas in a pod!


I have 100 more pics of the big day, but that will have to do for now.

Uploaded a few pics from my phone.
Avery made the rep soccer team, the girls voted on the slogan for their practise jerseys. We love it!

Was a very brutal winter this year, but we still managed to get outside once in awhile. The girls tried skating on a pond for the first time, and had a blast.

We watched a lot of television during the Olympics, Brennyn wore her Canada t-shirt to school a few times.

A few pictures, long overdue!

Is it time for an update

Life seems to get busier as the children get older! Between the girl's school, soccer, art classes, swimming lessons and sparks, doctor visits, there just isn't much time left for blogging.

Let's see, where to begin:
Avery's made some great friends this year in school, she is a little more chatty in school. She made the under 9 rep soccer team (a year ahead of schedule, lol). That girl loves her soccer!! She doesn't love school, but her marks are great. Grade 2 is a bit more difficult and the homework has increased much to her delight. She has turned out to love Star Trek just like her Daddy, in fact she really is a miniature version of him, two peas in a pod.

Brennyn, well, she still keeps me on my toes. Grade 1 has been an adjustment, but we are finally getting somewhere in regards to school help. Brennyn is very smart, but her social skills are not improving. She's still that awesome, funny, loving, wild child but she is having trouble relating to the other kids her age.
She does get some sensory breaks at school and they seem to be helping! We're also doing further testing to make sure she gets any assistance she may need to continue to be that loving, awesome, funny kid!

In other news, we bought a trailer. It will be towed to the lot in a few weeks, as long as the snow finally melts, what a long winter!! Can't wait to spend some time on the beach!!

Happy Brennyn Day

Four years it has been since we walked into the temporary civil affairs office in Xi'an China and spotted you playing with some tourist flyers. The nanny tried to explain to you that we were your mama and baba, but you would have none of that nonsense. It wasn't until I pulled out a package of gerber snacks that your attention was instantly upon me (where it has been ever since). Only wish I had known about your food issues ahead of time, but we barreled forward.

You came willingly with us to the van (those snacks were the key) and even to the Wal-Mart to buy diapers (because we were told you were potty trained and had been for a long time, but this, among other things turned out to be far from the truth). We should have paid closer attention to your fear when we first attempted that initial Wal-Mart run. Too many people, too many sounds and too many sights for our sensory sensitive little one.

You ate your first meal with us like there was never going to be any more of this delicious food, and soon passed out on the bed (you were not having any of that crib, probably because you had been out of a crib for the last 6 months).
The next morning you took one look at me, and one look at baba and screamed an unholy, animalistic screech and did not stop for an hour. You continued to scream on and off for the next 2 weeks.
My poor little girl, you were so very scared and overwhelmed. You were also so very sick, and we had no idea until we were home. Parasites and infections, it's a wonder you were still so strong.

We made it through, you and I. It was a struggle, hard on your dad and I of course, but so much harder for you. You make me feel like the luckiest mommy in the whole world sometimes. Other times, well, it still can be a struggle can't it. We try so hard to fit you into a diagnosis, but maybe there just isn't one for you. You are you, my daughter and it is going to be difficult sometimes. However, we are going to always work together!

You are the most amazing child, so brave and loving. You care about other people, you always want to make sure everyone is okay. You say whatever is on your mind, and I find so refreshing, because I am the opposite. You never complain about visiting doctor after doctor. Yes, it does bother you sometimes that other kids ask you about your hands but you always tell them the truth, "I was born this way".
You are an artist my daughter. Even your teacher recognizes your talent, and I find this so remarkable since you are only in grade 1.
Everyone remembers you, wherever you go, simply because you have such a special, generous heart.

I am the lucky one.

A better shot of our Buda Bear.

Lost our beloved Buda Bear

Last week we had to make the very difficult decision to put our dog down. He was our first baby, and we spoiled him rotten, well I did until my actual human babies came home. I will admit that my doggies took a bit of a back seat once our children arrived, but Blair continued to dote on his dogs. Buda lived a long, happy life despite developing Cushings disease at the age of 8. He still managed to hold on for another 4 years, but his last 6 months were a little sad. He just was not the same dog anymore, he would still eat anything and everything, even up to the last few minutes of his life (he wanted those dog treats at the vet even when he was getting so tired). He just did not want to go for walks anymore, he barked at everyone, he could barely get up the stairs.
It was so hard for Blair, he wanted Buda to hang on for the summer, and Buda did. He made a few more trips to the trailer with us (although, the beach walks were cut way down).
I realized that we made the right decision as soon as the vet gave him the medicine to make him sleepy. Buda looked relaxed and at peace for the first time in months. We both sobbed and sobbed, but the vet was so good with us (and Buda). She gave us all the time we needed, and reassured us that we made the best decision for him. He was so very tired.

Sweet girl's tea party

Brennyn's birthday happens to fall on a National Holiday (Canada Day of course) so we often have to celebrate it with her friends a little earlier.

Went with a tea party theme this year, complete with candy, cupcakes and mini sandwiches.

Big sister Avery was the helper (tea parties really aren't her thing, lol).

Ectodermal Dysplasia

My youngest daughter has a very rare genetic syndrome. There is no cure, not much research being done (on her form of it). There are over 150 known forms of ectodermal dysplasia, Brennyn has something called ADULT (Acro-Dermato-Ungual-Lacrimal-Tooth) syndrome. She was born with cleft hand, syndactyly, tooth issues (although she is very fortunate to have a complete set of baby teeth, many people with ectodermal dysplasia need implants), eczema, etc. Her condition is far from life threatening, it's more of a nuisance for her (for lack of a better word). She will miss many days of school for specialist appointments over the years, we go to Sick Kids at least 8 times a year. She needs eye drops, skin cream and nose spray applied twice a day.

Yet, she is the most caring, sweetest child I have ever met. She is more concerned for the other kids we see at the hospital. She loves Sick Kids, she loves the doctors (for the most part).
My daughter is so brave, she has taught us so much. I can honestly say she has made me a better person, she has taught us so much.

Been so long, I almost forgot my password

Some long overdue pictures. Makes me realize how quickly my girls are growing up!

Tragic days

What can I say that already hasn't been expressed by so many. I am horrified by the events of the last few days. I feel so very sorry for the people of Boston, the runners and their supporters. I feel outraged that someone would commit such a senseless evil act, not caring who is hurt or killed. I can't get the image of that 8 year old little boy who died minutes after giving his Dad a congratulatory hug for running a Marathon. To me, it's simply not fair. I don't understand how this can happen.

We can say we will move on, not let these people, these terrorists win. Of course we will run again, the races will go on. Yet, things have changed. The innocence is gone again. Oh, they will not win, that is for certain, but our world has changed.

The one shining light in all that horror was that people came through, they helped each other in the worst possible circumstances regardless of their fear. They will continue to help each other no matter what, because that is what good people do!!

So overdue

Barely find time to post these days!!

Had a great March Break this year. I packed the week full of fun things to do, including swimming, skating, a Magic Show, indoor play centre. The girls didn't want to go back to school on Monday, no wonder!

Brennyn has an occupational therapist coming to her school this week (we've been on a waiting list for 18 months). She is there to access B's writing ability, etc. I personally feel that Brennyn's writing skills are on par with the rest of her class, but it's always good to have things checked out!!
We do have to work on her reading skills a bit, but she's still come a long way since last year!
It's hard for her sometimes, especially when she has a sister who reads at a grade 3 level at the start of grade 1 (and who also has a tendency to brag to her little sister about how great she can read, ah siblings).

Speaking of Avery, she has also come a long way with her socialization. She has a couple of little friends this year (considering she never said a word to any of the kids last year, this is amazing). These kids already call on the phone to speak to her (and they are only in grade 1). However, Avery still prefers to play with the boys. They play Minecraft apparently, or soccer at recess (her two favourite things).

March Break

I swear, every year the time passes so much faster. It's already March Break!
Anyway, my parents are arriving this morning to watch the girls for the weekend, while Blair and I hang out in the big city (Toronto). It's a win win for everyone. The girls love being spoiled by grandparents and I am planning on sleeping for two days (throw in a little touring, a lot of food,a lot of reading and even a little shopping). Blair is attending a Science Fiction convention, so he's very excited.

Partyyyyyyy

You only turn 7 once, so why not throw a crazy party with 15 children?? Live and Learn, live and learn.
At least Miss Avery had a blast, and that's the idea. Sports theme party at a local gym, Avery was in heaven!

Happy Year of the Snake!!!!