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World CDG Day

16 May

Today, May 16th 2017, marks the 1st official World CDG Day.  Ladybug was diagnosed with Congenital Disorders of Glycosylation in October 2010. I remember every single detail of the moment the doctor told me. There wasn’t really much information out there when we received her diagnosis. I had come across a website before hand that had several pictures of other children who had CDG, and I found one little boy who resembled Ladybug down to the same pudgy little hands. Fast forward nearly 7 years and there are Facebook pages, charity organizations, and now an official World CDG Day. I can only imagine how far we will go in the next 7 years.

This is an incredibly important day for our CDG family. We need to build awareness in order to increase the interest of academia, and the development of research. There is currently no cure or treatment for CDG. We need to be able to inform more physicians and every other healthcare professional out there, knowledge is power. Most importantly building CDG awareness will empower families and patients alike.

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A couple of years ago the CDG family worked together to develop a logo that would represent all of us.

 

 

It was recently announced that to go along with our logo, the CDG awareness colour will be green.

So today Ladybug is wearing a green dress complete with green ribbons in her hair.

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On The Move

2 May

As I was getting ready to write this update, for some reason the theme song from Days of Our Lives played through my head. I can’t believe that it has been 5 months since my last post.  I guess time really does fly when you’re having fun.  The school year is winding down, and I’m now starting to plan our HUGE summer adventure. I won’t give too much away just yet,  but, we’ll be packing up the kiddos and taking our Airstream down to and across the USA – meeting some very special people along the way. I’ll be starting a new blog to share our journey with everyone too, so I’ll keep you posted.

Ladybug has been doing really well. She is excelling in school – and has grown very close to her adorable little classmate (who is quite the princess too). She is also making choices for which activities she wants to do during her day, and loves going for walks in her gait trainer. She has even started walking towards her classmate to be near her. *heart melted*
Here is a picture of Ladybug at school doing her physiotherapy in her gait trainer outside.

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There is alos another new fancy piece of equipment called a Dynamic Stander. I would have never thought that Ladybug would have liked this as she LOVES to move her legs, but, it is to entice her to stretch out her arms and touch the wheel to move around. She seems to be enjoying it as well.

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Ladybug also got to be the “swing tester” for her school. They are getting a new fully accessible swing and she got to go to the company that makes it to try it out and give her seal of approval. According to her teacher, she got quite upset every time the swing stopped, which doesn’t surprise me as Ladybug is becoming very good at communicating her wants and needs now.

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Happy 7th Birthday Beautiful

3 Dec

7 years ago today we welcomed our itty bitty little Ladybug into the world. She was born at 03:56 and in true Ladybug fashion – made a very grand entrance after a very long labour. Knowing her now I wouldn’t expect anything less as she LOVES being the centre of attention, just as every princess should.

DSC_0027At the time we didn’t have a diagnosis, and were told that the chances of her surviving the first year were beyond low. None of that mattered. We had our sweet tenacious baby girl and our life, although atypical for many new parents, was perfect.

Today we celebrate Ladybugs 7th birthday. In the past 7 years she has taught me patience, strength, courage, and perseverance.  Everyday brings forth a new struggle, but everyday she takes those challenges and kicks a**!  She is doing amazing in school, and has even started to take steps in her gait trainer. Ladybug adores her little brothers, and often smiles and laughs when they play together.
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Happy 7th Birthday Beautiful! dsc_0591

 

Tenacity and Resilience

16 Oct

Last week I came across an amazing video called The Brain that Changed. It shares the story of a man in Australia who has Cerebral Palsy. His family pushed the known boundaries and explored Neuroplasticity.

Neuroplasticity, also known as brain plasticity or neural plasticity, is an umbrella term that describes lasting change to the brain throughout an individual’s life course. The term gained prominence in the latter half of the 20th century, when new research showed that many aspects of the brain can be altered (or are “plastic”) even into adulthood.   Wikipedia

Andy’s nervous system was still “plastic” enough that he was able to change and do many things in adulthood that he’s never been able to do before.

It is incredible to watch his transformation, and the story reignites hope that Ladybug can too achieve the unimaginable.

Then just yesterday I was sent another video. It is the most recent ad campaign for SickKids Hospital in Toronto, Ontario. It is raw, powerful, fierce and inspiring. Yes, it might be hard to watch and is definitely not your typical soft music fluffy bunny children’s hospital campaign – but, it gets the point across loud and clear. It’s time to fight even harder and conquer.

I feel like the universe is trying to send me all these messages lately about Ladybug.  We have put a lot of her therapies on hold these past couple years as they are extremely expensive.   I’ve always known that deep inside there is a little girl waiting to break free, we just need to find the right therapies and tools that can help Ladybug.  It’s time to regroup, take a fresh look at our budget and maybe even plan a fundraiser.  Between my tenacity and Ladybugs resilience we WILL move mountains.

Beautiful Lengths

21 Sep

Anyone who has seen Ladybug, knows that she has the most beautiful hair. Hair that is usually adorned with adorable bows. This past summer that same beautiful hair, was becoming increasingly difficult to maintain.

Every single morning she would wake up and her hair would be in tangles. It didn’t matter how I braided, or put it up in the evening.  Ladybug has always been great with me doing her hair -she’s had nearly 7 years practice.  However, she was not happy about the untangling every morning. Even with a “special” brush.

It was time to make the cut.  I always knew her hair was long, especially when trying to braid it, so donating it was the obvious choice.  There are a several places in Canada that we can donate to. We choose Beautiful Lengths – Pantene. Beautiful Lengths is a partnership between Pantene® and the Canadian Cancer Society®. Donating as little as 8″ of hair will go towards real-hair wigs for women with cancer.

Because my biggest little man needed a haircut too, I opted for a very child friendly salon. Ragamuffins Children Salon was the perfect fit.

Our stylist was amazing at cutting Ladybugs hair.  She took her time, talked calmly, and was very attentive. So much so that I will definitely be making the drive back next time any of my munchkins need a haircut.

 

 

 

 

Happy 1st Day of School 2016 – Year 3

7 Sep

I just put my little Ladybug on the bus to head off to her first day of school.  She was very excited last night when I told her she was going to school the next day. I envisioned her waking up with a huge smile, kicking and laughing while getting ready. Then chatting all the way to get on the bus.   Ya – not so much. When a princess is used to sleeping in until 08:00 all summer, the 07:00 wake up is a huge adjustment.  I’m sure once she gets to school and sees her teacher and all her friends she will perk right up.  We are truly blessed to have a school that is beyond a perfect fit for Ladybug so close to us.

Heading off to school isn’t just an adjustment for Ladybug, my biggest little man was a bit upset that he couldn’t go to school on the bus this morning too.  He seemed to calm down once I told him we were heading to Nana and Papa’s farm instead. He is set to start Nursery School in the next couple months, which I know he will love.  Who am I kidding, I will too!  The countdown is ON!!!!

This past summer has been great! Very hot, and a little crazy with 3 little ones – but great.  I will update all of our exciting adventures and news in the coming months.

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The Dance Ability Movement 

8 Jun

When I was pregnant and found out we were having a little girl, I envisioned her jumping around in a little tutu taking ballet classes. Even after we received Ladybugs prognosis, I continued to have dreams where she was running around on a stage with her best friend from Mac Kids.
Thanks to 2 incredible sisters Mallory and Jade, my dreams of Ladybug dancing on stage came true last week. Mallory and Jade are Occupational Therapists and Dance Instructors who started The Dance Ability Movement.  They offer safe and inclusive dance classes for children of all abilities. Each dancer also gets a volunteer dance buddy. Ladybug’s dance buddy’s were Selena and Claire.

Here is a picture of Ladybug and her dance buddy Selena in one of the classes. I’ll post the professional dance pictures with both volunteers and the recital pictures once I get them back in a couple weeks.

These dance classes also wouldn’t be possible without a host studio. We were very fortunate that Ballare Studio Dance agreed to be that host. The studio owner and dancers have been incredibly welcoming.

I am counting down the days until we return to Ballare Studio Dance and see all our Dance Ability Movement buddies in September – approximately 90.

Until then Ladybug will be keeping busy with playing baseball, day trips with her brothers, and splashing in the neighbours pool.  What more could a girl ask for.