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 

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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.

Sneak Peek

29 May

Now that Ladybug is home and on the mend, we can now focus on some very exciting things happening today and all week. Here is a little sneak peek of what’s to come. 

That’s More Like It

27 May


We are home!!!  As you can tell from the picture above Ladybug is very, very happy to be home. 

The final consensus was that she had a severe ear infection. 

Ladybug woke up yesterday and I noticed there was yucky goop coming out of her ear.  The peds team called the ENT doc (ear nose throat) who took one look and brought her to the clinic. Ladybug’s ear tube was blocked and needed to be suctioned. Turns out she has a massive ear infection that couldn’t drain because the tube was blocked. Not one of the 4 doctors who previously looked in her ear noticed the tube was blocked. If it wasn’t caught the infection could have easily spread. It’s pretty scary stuff. 

Aside from being extremely tired, and irritable from the pain she is doing well. 

I too am recovering. Hospital stays are certainly not like they were when Ladybug was an only child. I now have two additional little ones to think of. 

I’m eternally grateful to my parents (especially my mom) for taking such good care of my two little princes, to my brother and sister in law for bringing my little man to the barn to help with chores, and to my next door neighbours who have become a part of our family, for taking care of our furry kid without us even asking. 

I also want to thank my friends, family and complete strangers for all your continuous prayers and well wishes for Ladybug. It means the world to us. 

No Room at the Inn, or No Beds on the Ward

25 May

It’s 06:50, all I hear are IV’s that are alarming, a detoxing kid screaming obscenities in the next room, and the early morning bustle of the nurses. 

Friday, Ladybug came home from school very lethargic, and by the evening had a super high fever. All Friday night and Saturday I kept waiting for the cause of this fever to appear. Nothing did. No sign of a virus, no runny nose, cough, vomiting or diarrhea. The high fever continued the entire long weekend. Tylenol only dropped it down to a low grade fever. Her seizures typically increase when she’s sick, but this time was a whole new ballgame. Friday she had a Gelastic Seizure (laughing seizure)shortly after she came home from school. She hasn’t had one in at least a year or two. Then Monday evening she had her first of several tonic seizures. Tonic seizures are pretty uncommon and are typically seen in those who have Lennox-Gastaut Syndrome, which is the rare seizure disorder that Ladybug has. During a tonic seizure, all the muscles contract and the entire body stiffens. It is unbelievably heartbreaking to see her tiny fragile body stiffen up like it did. Her eyes went blank and she disappeared for what seemed like hours. In actuality it was only about 15-20 seconds. 
Yesterday, she was admitted to the children’s hospital. It is currently a pretty busy place, and there are no beds available upstairs on the ward. Not a single one. Oddly enough I’m quite happy in the ER dept right now. There is always something going on and the piece de resistance is that we have a private room down here. 

As of now there are no explanations for the fever. Labs are good, the possible pneumonia was ruled out as was a kidney infection. 

Ladybug is sleeping soundly now and I’m thinking I might have a quick cat nap before rounds too. I’ll post when I know more. 

In Honour of Rare Disease Day – Help Me Get CDG Recognized as an Official Day.

29 Feb

Today, February 29th 2016 marks the 9th International Rare Disease Day.

5 years ago I published this blog post dedicated to Rare Disease Day.

When my daughter was first diagnosed with Congenital Disorders of Glycosylation, there wasn’t a lot of information or even support for families like myself.  At the the time of her diagnosis she was the only girl in the entire world known to have her subtype. Now, thanks to the wonders of science and social media, I have been in touch with a family in the USA who has a beautiful little girl with the same subtype as my little Ladybug. Through the dedication and hard work of my CDG family, there are now CDG conferences both in North America and Europe and several Facebook groups that have become an amazing means of support for so many.

I couldn’t think of a better day to announce that the CDG families are working towards making May 16th World Congenital Disorders of Glycosylation (CDG) Awareness Day! Please sign our petition to The World Health Organization (WHO) here. 

I also encourage you to share this blog post with all of your friends and family.  You can easily share via Twitter, Facebook or email with the buttons at the bottom of this page. The more signatures we get the faster we can make this dream a reality.

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