Tag Archives: Lennox-Gastaut Syndrome

Just be Kind

13 Aug

Friday March 13, 2020 was the last semi “normal” day I can remember. The kids were still in school, and I was preparing for the 2 weeks off due to the Coronavirus.

As everyone is well aware, 2 weeks turned into 5 months. The longest March break EVER!!!

It was hard on all of us, the kids especially.  Ladybug really missed her school routine and her friends, the boys were loving it at first until we entered full lockdown and they couldn’t see their cousins. It was and is physically and emotionally draining.

On a positive note – having a child who is medically complex put us at a slight advantage over the average person in Canada.

  1. We always have a stockpile of hand sanitizer, disinfectant wipes, and diapers.
  2. Coughing or sneezing into the “crook” of the arm was taught before the boys could speak their first words.
  3. Our hand washing protocol is very strict here.
  4. The complex care team at the children’s hospital is on speed dial and scheduled a “what to do if” virtual appointment right away to make sure we had all the meds we would need.
  5. We are used to socially distancing during cold and flu season.

Now that it’s nearly September, we are facing a new set of challenges – preparing for back to school during a pandemic. I never in my wildest dreams imagined that face masks would be a part of our back to school supplies, n’or did I ever imagine having to decide if or when to send my kiddos back.

Every parent has the right to make this choice based on what is best for their family. As of now, we have chosen to send the boys back to school on September 8th, and I’m still waiting to hear what the plan is for Ladybugs school. I’m contemplating driving them back and forth, which means that my plans for when the kids return to school, will have to be put on hold again. It kinda sucks! It’s frustrating! However,  it’s our life now, and as crappy as it may seem at times, it could always be worse. Like I’ve written about before, it’s all about perspective.

Please remember to always be kind to one another, and try not to attack parents for their choice on sending or not sending their kiddos to school.   Whichever path they decide is the RIGHT one.

Just be kind.

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October is Dwarfism Awareness Month

6 Oct

October is known internationally as Dwarfism Awareness month.

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If I’m going to be completely honest, this was never even on my radar until this past September. I really didn’t know that much about little people aside from a couple of relatives, as well the Roloff and Arnold/Klein families who are featured on TLC’s Little People, Big World, and The Little Couple.

For the past few years I’ve been fighting non-stop to get answers as to why Ladybug wasn’t growing. She is nearly 10 years old and the size of a 2-3 year old. I was always told that a shorter stature can be a part of CDG – but this was beyond a shorter stature. In the summer we were told that she “qualified” to start HGH  (human growth hormones) to help her grow.  The doctor was all ready to get started but this didn’t sit right with me. Setting aside the football size field of horrible side effects, they still hadn’t given a reason as to WHY she wasn’t growing. Think about that for a moment – it’s like a person who keeps breaking a bone and the doctors don’t find out why they just keep putting a cast on it. (On a side note we’ve also discovered in this quest, that Ladybug has Osteoporosis) I wanted to know why she wasn’t growing before I’d even consider putting her on HGH.

After having a couple of scans, we waited patiently for an appointment with the lovely metabolic geneticist that diagnosed Ladybugs subtype initially, to try and get some answers. It was at this appointment that she confirmed, Ladybug is a little person. She has a rare form of Skeletal Dysplasia otherwise known as Dwarfism – her body is fully proportionate it just isn’t able to grow like an average person. Similar to her type of CDG, CDG SLC35A2, this form of dwarfism is not genetic. Meaning Daddy-o and I don’t carry the gene.

I’m typically pretty strong in appointments – when we received Ladybugs initial CDG diagnosis I was prepared for it, when the onset of tonic clonic seizures started, as heartbreaking as they are, I was prepared for them because I knew how horrible LGS was. However, this diagnosis hit me hard. For years I was fighting for answers. Answers as to why she isn’t growing – 1 cm in 2 years is not typical by any means. When I heard her say the words “little person” I broke down and cried. It wasn’t tears of sadness or grief, it was tears of relief. Relief that I now know why she isn’t growing, relief that I know HGH will not help her type of dwarfism, and relief that I no longer have to fight for answers.

So, this month – October, will be our first time celebrating International Dwarfism Awareness. We have already been welcomed into the LPO – Little People of Ontario community and I’m looking forward to meeting them at the Holiday Party next month.

Between going back to school and wedding planning things have been pretty hectic, however, I will be writing a post soon about Dwarfism. If you have any questions please feel free to reach out to me and I’ll do my best to answer them.

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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.

 

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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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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.

 

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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

 

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