Wait and See. 

12 Jul

Let’s just wait and see. A pretty common sentence around here these past few days. As frustrating as it can be, I’m trying to remain positive and remember all the gains she’s had thus far. 

Ladybug’s sodium and potassium levels have almost normalized, the incision sites on her tummy are all healing beautifully, and her pain is finally under control. 

Sunday, Daddy-o brought her little brothers for lunch and a fun visit. We had a great time outside on the beautiful playground, and my almost 3 year old sang to her to calm her down when we returned to the room. The team started her on TPN (IV nutrition) a couple days ago – the downfall is that TPN will typically burn through IV lines. She currently has 3 IV sites, 2 of which are at the end of their lifespan.  Because of this and the fact that blood work sites are slim pickings, she has been scheduled to have a PICC line put in sometime tomorrow. A PICC – peripherally inserted central catheter, is a long, thin tube (called a catheter) that goes into your body through a vein typically in your arms, legs, or neck. Ladybugs last one was in her leg. The end of this catheter goes into a large central vein that directly drains near your heart . She will be put under for this procedure. 

Her tummy was draining through a foley line into a bag, but this morning it was clamped with the hopes of getting things moving. It seems to be working, and so far touch wood, no vomiting. 

Now we just wait and see. 

Emergency Surgery 

7 Jul

Last night Ladybug was sent to the OR for emergency surgery to fix a bowel obstruction. 

Monday started like any other day. Ladybug woke up and was her typical happy, chatty self. By Monday evening it was like someone flicked a switch. She began vomiting and not keeping anything down. I thought it was odd that she has a tummy bug as she wasn’t really around anyone but us, and there were no previous symptoms – but still started her tummy bug protocol of continuous Pedialyte feeds at a very low rate and gravol. 

For some reason the gravol wasn’t helping so I tried a different means of giving it to her to make sure she didn’t throw it up. 

By Wednesday her spit up became non stop and was dark brown. That bright red flag appeared and I went into prepare for a long hospital stay mode. 

We arrived at the hospital during what I call the magical hours. The ER is usually pretty empty – this was entirely planned.  (Not my first rodeo) 

Rebuilding fluids were top priority then the focus was finding out why she was spitting up such yucky stuff, why no bm in the past few days and why low grade fever. 

X-rays and ultrasound showed distended bowels. (Air in the bowels) Which was most likely caused by a blockage. 


Ladybug went into surgery at 23:00 Thursday night and they finished 01:30 this morning. Her bowel got caught up and tangled in a band of scar tissue from her previous bowel resection in 2010. Thankfully the surgical team were able to fix and save her bowel and no resection was needed this time. There is a risk of this happening again, but at least I’ll know the warning signs right away. 

She is on oxygen and resting nicely. Her kidneys are not working very well though, so fluid will be increased to try and jump start them.

We will be here for a while, but that’s ok. Ladybug is a fighter and she will be better in no time. 

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.