There’s No Place Like Home

20 Jul

Within a matter of seconds my beautiful little Ladybug knew she was back home, and is finally able to have a comfy nap. 

Slowly But Surely

15 Jul

Things are moving along here at Mac Kids. Ladybug had her PICC line put in on Thursday afternoon, it was a huge relief and meant no more pokes for daily blood work and no new IV lines. It also couldn’t have come at a better time as 2 of the 3 IV lines were kaput as of that morning. 

This is Ladybug waiting quietly for her turn to get the PICC. Her eyes are as big as the penguins. 

This morning she started on 10mls per hour of Pedialyte – this is big news as it means we are almost in the home stretch. Next steps are to slowly increase the rate and then in a couple days (providing the pedialyte is tolerated) add her formula. Once this is tolerated at a normal rate, the Mic-Key button will be put back in and fingers crossed we will be good to go. This next process, providing all goes smoothly, will take around a week. 

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.

CDG Logo_HCH_TextCentered_RGB


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.






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.


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.


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.









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.

Happy 7th Birthday Beautiful! dsc_0591