Happy 9th Birthday Ladybug!!

3 Dec

December 3 – not only is it International Day of Persons with Disabilities, it also happens to be my Ladybugs 9th birthday.

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Two incredible reasons to celebrate this magical day.

I think about this day 9 years ago and am so proud of how far we have come. Ladybug is a fierce, strong, beautiful, little rainbow miracle. On December 3, 2009 I was given the gift of becoming a mother – a dream come true.

I am eternally grateful for everything over these past 9 years, and am truly blessed to be this sweet little girls mama.

Happy Birthday Bug!  xoxo

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Giving Tuesday

27 Nov

Giving Tuesday is a movement that was created in 2012, and has become an international day of giving. It follows Black Friday and Cyber Monday – two very busy shopping days in North America.

I want to share with you a few of the organizations that are near and dear to our hearts.

During the summer of 2017, when Ladybug was in the hospital for back to back surgeries, and a lengthy stay, I had an aha moment. Sounds cliche I know.  I’ve written many times about the special needs community and how they are amazing for rallying around each other at times of need.  This was very evident that summer. Families that Ladybug took dance with a couple years prior, came to visit several times always bringing snacks, and a complete stranger drove from over an hour away to drop off a weighted blanket to help Ladybug sleep. I could go on and on with the amount of people, not just in the SN community, who were there for Ladybug and myself when we needed it the most.

I felt very fortunate to be a part of a group like this, and knew I wanted to pay it forward. During that summer I saw a Facebook post from a girl, Nikki, who I used to work with. She had moved to India several years prior to volunteer with Sarah’s Covenant Homes. SCH is a group of family like foster homes for children in India who have special needs. These children are in need of sponsors for things like food, clothing, schooling, medical equipment, surgeries etc. The things that many often take for granted.

I felt drawn to help out, even if it was only a little bit every month. That was still a little more that SCH didn’t have. It became a family event, as I would sit down with my own children and talk about SCH, India, and the first little girl we sponsored. My boys would often take the globe out, point to where India was, and were always excited when we’d get an update or photo of our new friend.

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It was an incredible teaching/learning opportunity for myself and my children. It also inspired us to help children from another organization. We became Birthday Box sponsors for a little girl in Gjoa Haven, Nunavut.  The cost of typical birthday party supplies in the far north is insanely high, that is if they are available. This was our second year putting together a box filled with cake mix, icing, candles, party decorations, some treats, and a few gifts. The kids are a part of the entire process, from picking out the items all the way to going to the post office to ship them.

My children are learning what it means to be kind, generous, and give every day – not just one Tuesday a year. This is the best gift I could ever give them.

Here are a couple other organizations that are also very close to our hearts:

McMaster Children’s Hospital – Ladybugs home away from home.

Sanford Burnham Prebys Medical Discovery Institute – The incredible lab that offered to find out Ladybugs CDG subtype for us, when Health Canada refused. They continue to be an integral part of our journey, and I’m hopeful they will find a treatment and perhaps one day a cure for CDG.

 

We Are Not Alone

13 Nov

Nearly 3 years ago, I shared with all of you how my daughter was injured while in the care of a home health worker. Getting that call was one of my worst fears. It was very difficult leaving my medically fragile, non verbal child in the hands of a nurse, who for the most part was a complete stranger. For those naysayers who ask why I did – let me tell you, special needs parent burn out is real, and we need a break every once in a while too. However, since her accident I haven’t been able to have any new nurses in our home. Partly because there are no experienced paediatric nurses available, and partly because I’m deathly afraid of my little bug getting hurt again.

Since publishing that post, I have connected with many, many more families who have had negative experiences with nursing care as well. Stories that have involved nurses being drunk at work, or having locked themselves out of the house when they left to smoke a cigarette with the child being alone inside, or ones who have taken drugs while caring for a child. This has to stop. We live in Ontario Canada! One would think our excellent health care and governing bodies would stand by their guidelines to help families like ours. One of the issues is that there are far too many hands in the cookie jar. There is a shortage of great paediatric home care nurses, and an overage of upper management.

I went through the proper channels that were available to my daughter as a patient, and filed a report with the CNO (College of Nurses of Ontario).  After filing a report you wait for an investigator to be assigned to your case. Then you wait some more, and then some more. Over a year later, we were finally assigned an investigator who apologized for the delay, as they were very busy with many other investigations.

There are 2 massive issues right there. Firstly, in the time it takes to have someone assigned to investigate a claim submitted to the CNO, a health care worker could easily injure others or, in the case of Elizabeth Wettlaufer (a nurse in Ontario who is a convicted serial killer), cause death. According to the Toronto Star, the CNO allowed Wettlaufer to continue working after it was notified of the many issues surrounding her performance as a nurse.

Secondly, it took a year for an investigation to even begin because they were so busy with other claims. Nurses and health care workers are supposed to be put in place to care for our children, yet more and more reports and claims are being filed. Why?

A month ago, we finally received the “verdict” from a panel of professionals at the CNO. My heart sank as I read their statement shown below – the woman who allowed this to happen to my daughter was to receive advice. Yes, that’s right, advice on how to be a better nurse.

If the CNO is overwhelmed with files being claimed against nurses, and families are being forgotten about or brushed off, who is supposed to help protect our most vulnerable?

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Our Western Adventure with Juniper

21 Aug

Things have been pretty quiet on this page for a few months. The biggest factor was I was in full blown planning and packing mode for our summer adventure to the western USA.

It was an incredible journey that landed us and our vintage 31 foot Airstream trailer Juniper, in truly magical places.

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We saw Mt. Rushmore – which was incredible. We aimed to arrive right as the parking lot opened to beat the crowds. It was a great idea as the national monument really wasn’t that busy until we were ready to leave.

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Then we headed through the north and south loops of Yellowstone National Park, The Grand Teton National Park, and Mormon Row before heading north west to Missoula Montana.


I have been physically planning this holiday for 3 years – we were meant to go last year but Ladybug and her tummy had other plans.  Missoula, Montana was a must see on this journey. Not just because of it’s boho vibe and beautiful views, but because of one very special family. Ladybug was the 1st girl in the world to be diagnosed with her CDG subtype along with 2 little boys. Missoula, MT is where the 2nd girl in the world to be diagnosed with the same CDG subtype lives. They are “subtype sisters”, and it was a no brainer when heading to the western USA that we spend a few days with them. It was amazing watching the girls together and seeing first hand their similarities and differences. Our boys also hit it off right from the get-go and had a blast.

We are now home from our incredible adventure, and I’m in the lengthy process of unpacking everything! Definitely not as fun as packing it – actually that wasn’t really fun either, so I’m on the hunt for new packing suggestions.  After the first laundry run the highly organized outfit compartments were turned into a dig through the drawer and find game. I’m thinking packing cubes?!?

The highlights of the journey are on our travel FB page. We had a great time and can’t wait for next years trip. It was narrowed down between Alaska and the Southern USA – the kids picked down south so they could visit their cousins and so Ladybug could have fun at Morgans Wonderland in San Antonio – both of which are in Texas. It’s a super awesome accessible theme park built with children who have special needs in mind. Plus, I’ve always wanted to go to Savannah, Georgia so I’m adding that into the mix. Shhhh…don’t tell Daddy-o. 😉

World CDG Day

16 May

I can’t believe how fast one year has gone by.  I remember writing about the very first CDG Day last year, a few things have changed some good – some not so good. The one constant is that my little Ladybug is one fierce little girl.

Since Ladybugs two emergency surgeries and summer hospital stay, she has struggled to stay healthy. Each cold and flu that she caught seemed to take longer for her to recover from.  She has missed the majority of the school term. The smiles and happy jibber jabbers have been few and far between, but are slowly returning. Though she be but little, she is fierce. I keep reminding myself of this when I get a little sad about how fragile she is.  She will get better, and I’m hopeful her loud chatter will return soon. Until then, Ladybugs little brothers more than make up for it.

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This photo was taken on Mother’s Day (May 2018). 

CDG has been a massive rollercoaster in our lives, Ladybugs fragile little body is fighting and we will fight for her. It is a disorder to which there is no cure, and that is heartbreaking. I have to say though – it isn’t all bad. If it wasn’t for Congenital Disorders of Glycosylation, I would never have become a part of the most amazing tribe. I’ve grown so incredibly close to families that I’ve never met in person, we chat online, on the phone or FaceTime. Usually to ask questions about treatment options, questions about different ailments, etc., but it’s also just to talk to another mama who gets how rare and frustrating CDG can be. There is one mama in particular – she gets it! When we FaceTime I feel like I’m talking to a close relative or friend that I’ve known my entire life. It helps that our daughters have the same subtype too.

Last summer we were planning on heading to the USA for a family road trip with our Airstream “Juniper”, to see Mt. Rushmore and Yellowstone National Park. (Due to Ladybugs hospitalization we weren’t able to go) We were also going to meet Ladybugs CDG SLC35A2 sister. This sweet little American love bug is the 2nd girl in the world (Ladybug being the 1st) to be diagnosed with the same CDG subtype that my princess has. I’m so unbelievably excited that we will now be making that trek this summer. On the bright side of last summer, I had a lot of spare time while in the hospital, so all of the packing lists and must see tourist attractions like the Worlds Largest Ball of Twine list are already complete. Like last year I will be documenting our travels on a separate blog which I’ll post when I have it all up and running.

It’s PURPLE DAY!!!!

26 Mar

Purple Day 2013

Today, March 26th marks the international day for Epilepsy Awareness. My very first post about today was back in 2013. I always find it interesting to look back on my previous posts and see how far we have or haven’t come and what has changed.

The biggest change is that we’ve discovered Ladybug is seizure medication resistant. We have tried all medications that are safe for her to take and none have had any positive effects on her seizure activity, especially since she’s been diagnosed with Lennox Gastaut Syndrome. The other thing that made me chuckle, but in a bit of sad way, was how I was so excited that Ladybug was a whopping 20 pounds. 5 years later she is now only 23 pounds (10.5 kg). Although, she is taller so that is a big win – she has grown from 71cm to 84.5 cm (28″ to 33″). That is 1″ a year.

In 2015 we talked about starting her on a Ketogenic blenderized diet. This never came to fruition. Given Ladybugs reflux and tummy issues, in order for us to get her on a keto diet she would need a GJ feeding tube. This bypasses her tummy and goes strait into her intestines. It would also mean continuous feeds and would impact her school time, and could still potentially cause an increase in reflux. The cons far outweighed the pros at the time so we opted to put that idea on hold.

After quite a bit of research we were able to get Ladybugs neurologist on board with trying CBD oil. Although it was very helpful in her overall health and wellbeing, it had no impact on her eeg results and seizures.

So here we are March 26, 2018, a lot has changed in 5 years. I’m still very hopeful that there will be some kind of treatment we will come across that will help with Ladybugs seizures. Perhaps now more than ever as the type of seizures she is having is slowly increasing. Last week Ladybug had her first absence seizure. They should typically only last a few seconds but her lasted over 2 mins, then this morning what started as a typical auditory triggered myoclonic seizure turned into an almost clonic seizure where her arm started shaking. Thank heavens she returned to baseline quickly afterwards. I don’t know what we will try next treatment wise – maybe a different strength of CBD oil, or perhaps there is a new pharmaceutical that might show positive changes in kids with LGS. I do know that I will NEVER stop trying to find treatments to help my little bug live the best life she possibly can.

Here is the link to the 2013 post that gives more of a background on Purple Day.

 

It’s New Ear Tubes Day!

5 Feb

Hooray – it’s new ear tubes day!!!! Finally after far too long of a wait, Ladybug is getting new ear tubes put in as I write this. We’ve been incredibly fortunate to keep her healthy and germ free beforehand so we didn’t have to cancel the procedure. I was really worried especially given the new Pre-Op set up Hamilton Health Sciences has. I must admit I really don’t like it. You walk into a very large space, one side is an urgent care clinic that was filled with people coughing, sneezing, and a child threw up twice while we were waiting on our side. The two sides are split by little glass dividers. Every time someone on the other side sneezed or coughed I just envisioned all those germs floating over to our side of the waiting room. Whoever decided that it was a good idea to share a waiting area for people needing surgery (many of whom are medically fragile), with phlegmy, snot filled, puking people, needs to definitely reevaluate things. Don’t even get me started on the 3 1/2 hour wait to see a nurse and anesthesiologist. There has GOT to be an easier way for kiddos like Ladybug to go through pre-op. Lets just say a trip to Starbucks after was definitely needed by the time we got out of that place.

Well that’s my little rant for now. All things considered, we are incredibly fortunate to have such a great team though. On a super awesome bright note, our favourite Mac Kids PSW Liz stopped in to see us while we were waiting for Ladybug to go in. It was such a great little visit, and just in her magical Liz way, she immediately had Ladybugs attention just by the sound of her voice.

I’ll do a quick update on the Little Ladybug Hugs Facebook group once my little princess is out of recovery.

The picture is one I was able to capture of Ladybug relaxing and enjoying a snuggle with mommy. It didn’t last long as she was quite unhappy that she wasn’t getting water when she signed for it.

Picture Description:

Ladybug, a teeny tiny 8 year old girl is snuggling in her mommy’s arms. Mommy is wearing a beige cardigan and Ladybug has her hair braided and is wearing a white kids hospital gown with a green ribbon by the neckline and puppy dogs, bees, and butterflies on it. She has her eyes slightly open and her left hand partially open and resting on mommy’s chest.