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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Flashback Friday – Valentines Day 2010

12 Feb

It’s crazy to think that this picture was taken just 6 short years ago – she was only 2 months old.  Ladybug was in the hospital for “Failure to Thrive”, (A common diagnosis for children who, for no known reason aren’t gaining weight.) which went side by side with not tolerating feeds.  This was her first Valentines Day in the hospital.  After her nap we ventured out of the room and handed out Valentines to the kids on her ward.

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We are praying that this Valentines Day we can keep Ladybug out of the hospital.  She is fighting bronchitis, an ear infection, and a fever that has been teetering between 38.9-39.9 C or 102-103.9 F for the past two days. We’ve just returned from the doctors and are hoping that round-the-clock Tylenol, a dosage increase of inhalers, and the addition of antibiotics will do the trick.

If there is one thing I am certain of, it is that my little Ladybug is a fighter.  It breaks my heart to see her so sick though. I just have to keep reminding myself, this too shall pass.

5 Tips When Hiring a Nurse/Home Health-Care Worker For Your Child With Special Needs

6 Jan

Last week while in the care of a home health-care worker Ladybug fell off her change table and hit her head on an open drawer. She had a cut on her eyebrow, bleeding nose, loosened her two front teeth and lost her ear tube.  Getting that phone call and hearing my little girl screaming in the background was by far the worst thing I’ve ever experienced.  I thank heavens our neighbour (who happens to be an ER nurse) was home when I called, and she came over to be with Ladybug until we got there.  My heart sank as I pulled up to the house and there was an ambulance in my driveway.  Aside from being in a lot of pain, Ladybug was stable enough that we were able to keep an eye on her at home that night.

The picture on the left was the day after the accident. As you can see her eye was swollen shut and there was a significant amount of bruising. The happy bright-eyed one on the right was taken this morning.  The swelling has started to subside and she is now rocking a lovely plum and goldenrod shade bruise.

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I knew I wanted to write about everything that happened that afternoon, however, I also knew I wanted to be tactful about it.  Well…to be honest…only part of me did.  The other part wanted to go on a rant about how infuriated I became every time I looked at my sweet little bugs swollen and bruised face.

I decided to enlist the advice of an experienced mama and blogger extraordinaire.  Her reply was exactly what I needed to hear – “Be pro-active and try to spare this from happening to another child.”  So here it goes. 5 tips when hiring a nurse/home health-care worker for your child with special needs.

  1. Ask a lot of questions.  When we hired our first few home health-care workers, I had a yellow legal notepad full of questions to ask.  Everything from their qualifications and experience with children, to how they would handle emergency situations.  Give them scenarios and ask them to describe what they would do.  As time went on I became a little more easy-going when new health-care workers started and never bothered with these questions.  However, given recent events I will most certainly be pulling out that trusty yellow notepad again.
  2. If possible set up a trial shift so you can watch how the potential candidate is with your child.  Keep in mind there may be some first day jitters, but it will definitely give you some insight if they’re the right fit for you and your child.
  3. Be very clear about what is required of them.  If there are certain behaviours your child might have, let the home health-care worker know exactly how YOU want them to handle these behaviours. Perhaps your child loves a certain TV show, song or story book – make sure they are aware that they may watch, sing, or read over and over again.
  4. Don’t assume that their training is adequate for the specific needs of your child. Just because they have an RN, RPN, or PSW behind their names doesn’t mean they have been trained in certain areas or have ever worked with children before.  This goes back to tip #1. If your child has significant medical needs like a regimented medications schedule, feeding tube or tracheal tube for example, ask them if they have experience in this area.  This is all very important to find out before you hire them.
  5. Most importantly GO WITH YOUR GUT INSTINCT. Don’t be afraid to tell them or the agency that it’s not going to work out. I promise you won’t hurt anyone’s feelings and it could potentially ward off any issues in the long run.  It is your right as the primary caregiver. You know your child better than anyone else, and are their first lifelong advocate – don’t ever forget that.

 

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