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!