It’s the Little Things

9 Mar

It’s been quite a while since I’ve had to make any big health related/ hospital stay updates. The past week mushes together in one big blur.

I’m not going into any big details because Ladybugs complex care team and ID team are about to round. Saturday my little bug was having a lot of tummy issues and passing mucous like blood. The wards upstairs were all full so we camped out in our cozy little room in the ER. Sunday we moved up into our new home. This is about the point that her health started to get a lot worse.

She tested positive for C. Dificille, her iv line failed, they put in an un-sedated emergency picc line, then a few hours later she’s spiked a 40.5 fever.
For the past few days she has barely opened her eyes. Any medical mama will tell you they can stay strong and give reports to the teams during rounds better than any med student ever could, while remaining calm the entire time. I could feel my eyes swelling with tears as I shared with the team that I’ve never seen my bug so unresponsive for such a long time. Even when her daddy-o surprised us for a visit the other day, she couldn’t even open her eyes to look at him. If you know us you’ll know that he is her favourite person, and no matter how upset she is, when he walks in the room she lights up. It was a very bittersweet moment.

Ladybug has been on the most wickedly strong antibiotic called Vancomycin, and yesterday started on TPN (Total parenteral nutrition is a method of feeding that bypasses the gastrointestinal tract. A special formula given through a vein provides most of the nutrients the body needs. The method is used when someone can’t or shouldn’t receive feedings or fluids by mouth).

Today she opened her eyes and was quietly cooing. It was the most magical sound I’ve ever heard. Then something even more brilliant happened. I put on cartoons for her to watch while I got ready for the day, and Ladybug started kicking, yelling, and was not happy at all. I know the Vanco causes tummy cramps but that wasn’t it. Then I remembered that when her brothers are watching a t.v. show that she doesn’t like, she has a full on meltdown until they change it to something that pleases her highness. I grabbed the remote and picked a channel called HGTV it’s pretty much a home renovation channel. Immediately, the fussing stopped and she let out the biggest sigh. As if to say “ it’s about time you turned off the cartoons, I’m a teenager now not a baby”. It was truly a proud mama moment. My little Ladybug was slowly starting to come back to us.

Today will be mostly monitoring, bloodwork, tummy acid level test, and that’s pretty much it. I’m hopeful her g-tube feeds will slowly start in the next day or two.

Thank you to everyone who has reached out to check in on Ladybug, to our neighbours who have dropped off food for the boys, and especially to Auntie Stacy who picks the boys up every day to bring to school then becomes their second mommy after school until daddy-o gets home from work. I’ve never liked asking for help because it’s “easier” to figure it out on my own. Until it’s not. With you, there was never a need to ask you for help, you and your family automatically stepped up when we needed you the most. We love you, and M, & T, and will be forever grateful.

Here’s an older picture of my little Ladybug when she was happy and feeling good. She is sitting in her wheelchair, outside on a sunny day. Surrounded by greenery. She’s wearing a floral dress, pink sparkly boots, and has a little side braid in her hair.

Neurology Update

29 Jan

Accessibility Adoption AFO's Back to School C.O.R.D Canadian Organization for Rare Disorders CDG CDG Awareness CDG Family Network CDG SLC35A2 Children Congenital Disorders of Glycosylation Doctor Dwarfism Epilepsy ER Family Family Day Friends Gait Trainer Global Genes Project Hope Ibellieve Foundation Kindness Lennox-Gastaut Syndrome Life Little Person Mac Kids May 16 McMaster Children's Hospital Melissa Nimijohn Mensch Mic-Key G-Tube Myoclonic Seizures NG Tube Parent Perspective Port-a-cath Purple Day Rare Disease Day Sanford Burnham Medical Research Institute Seizures Suck Simon Ibell Special Needs Mama The Straight Story World CDG Day

I’m going to keep this post short and sweet, and will work on a more generalized update in the coming week or two. Life is a bit chaotic right now, as I’m sure many of you can relate. 
 
On Tuesday Ladybug and I made the snowy trek to the London Children’s Hospital. It was a very long, but necessary day. 
 
Ladybug had been having an increase in tonic clonic seizures over these past two years, and thankfully, they now seem to be somewhat under control with medication. She still has them if she hasn’t slept well or is fighting off a virus, although they are pretty quick and don’t require *rescue meds. 

We have, however, noticed that watching her favourite musicals on the TV or lights turning on/off have been triggering something.  Tuesdays EEG confirmed what we were worried about. 
 
Ladybug is now having strong photosensitive/photoparoxysmal response (PPR) myoclonic seizures. When visual stimulation such as flashes of light, provokes an epileptic seizure, it is called a photic-induced seizure.
 
The general triggers are usually flashing lights (like strobe lights, camera flashes) or flickering images, even sunlight flickering between trees or on the water, television (TV), video games, and environmental lighting. This information all passes through the eye into a part of the brain called the visual cortex. The visual cortex then sorts out the images received by the eye. Flashing, flickering and repetitive patterns cause the visual cortex to be overloaded with images and this can cause a seizure in people who are sensitive to this trigger.
 
While we can certainly reduce the amount of triggers, it is simply impossible to remove them from Ladybugs life entirely. They are very difficult to treat, and because of the rate at which she has them and how quickly they are caused, we need to try and get them under control as soon as possible. She will be starting an additional medication immediately, with the hopes that it will help. The alternative is not something I wish to share or think about at this point. 
 
God willing it will work. If there is one thing I’ve learned in the past 11 years of being Ladybugs mama, it’s that she is one heck of a fighter. 
 
“And though she be but little, she is fierce.” Shakespeare
 
 
 
Our Princess - 4 weeks old
 
*Rescue Meds are generally fast-acting, which means they will start to work quickly to stop a seizure once they get into the bloodstream. 

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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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LADYBUG IS 10 YEARS OLD!!

3 Dec

Today marks a massive milestone for us.

On December 3, 2009 my beautiful little Ladybug was born.

She is now 10 years old!

It has been an adventurous 10 years, full of heart breaks and triumphs, and I’m so happy to be able to celebrate this most auspicious time in her life.

We will be having a big birthday celebration in true princess style for her in the new year.

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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Myths and Facts

10 Jul

I will preface this post by saying the tumor that was removed from my breast is benign (not cancer)! YAY!!! The lymph nodes in the area are still quite enlarged (since the first scan last September) so I will return in 4 months for another scan, and if they haven’t gone down by then….well I’ll deal with that if or when the time comes.

In these past few months I have reached out to breast cancer survivors, as well as those recently diagnosed, just to chat and hear their experiences. One of the common topics that repeatedly came up, were the myths that surround breast cancer.  I would like to share some of these myths and facts, as it is very important for everyone to know.  I even had a former medical professional tell me, that if I had no relatives with breast cancer the chances I would have it were next to none.  That is myth #1, in fact 80% of women who have breast cancer do NOT have a family history. 

Know your body, and if something isn’t right don’t be afraid to seek medical help or go for a second opinion.

Here are my top 5 myths about breast cancer from the Canadian Cancer Society and Screening for Life.

  1. Only women with a family history of breast cancer will get it.

    The truth is, 80% of women who develop breast cancer have no family history. So it’s important to understand that you are still at risk for breast cancer even if no one in your family has ever had the disease.

  2. Do antiperspirants cause breast cancer?

    The claim

    Antiperspirants may cause breast cancer because they:
    • stop your body from sweating and keep toxins inside your body
    • are applied near lymph nodes
    • contain aluminum

    The truth

    There is no evidence that the use of antiperspirants increases your risk for breast cancer.

    It’s true that antiperspirants stop perspiration (sweating), but the main purpose of perspiration is to cool your body – not to get rid of toxins. Lymph nodes in the armpits clear some toxins from your body, but your liver and kidneys play a bigger role. Far more toxins are removed by your kidneys and liver than through sweating.

    Most breast cancers develop in the upper, outer quadrant of the breast near the armpit. But that’s because this area has a lot of breast tissue, not because lymph nodes are there.

    Some antiperspirants and deodorants contain aluminum. Your doctor may tell you not to wear deodorant containing aluminum when you go for a screening mammogram. The aluminum could show up on the mammogram images and lead to an inaccurate result by making breast cancers and other abnormalities harder to find. But there is no link between aluminum and breast cancer risk.

  3. Does stress cause cancer?

    When you live with a lot of stress, you’re at a greater risk for developing cancer.

    The truth

    Research has not proven a definite cause-and-effect relationship between stress and cancer. The connection between your emotional (psychological) health and physical health is very complex. Psychological stress can affect your body. Some studies suggest a link between various psychological factors and an increased risk of developing cancer.

    3 cancer risk factors linked to stress
    • Stress can weaken your immune system. Your immune system defends your body against infections and diseases, such as cancer. A weakened immune system plays a role in the development of some types of cancer.
    • Stress can alter the levels of certain hormones in your body. This may also put you at greater risk of developing cancer.
    • Stress may lead to unhealthy behaviours. Overeating, smoking and heavy drinking are all lifestyle factors that increase cancer risk.

  4. What’s the link between sugar and cancer?

    The claim

    Sugar feeds cancer – and it makes cancer grow faster.

    The truth

    Your body’s cells consume sugar as they grow and divide, but eating sugar does not make cancer cells grow faster.

    All cells require sugar (glucose) for energy. Your body can also store sugar to use as energy later. Your body needs this sugar to function normally. Canadians consume thousands of dietary components every day, so it’s hard to pinpoint precise links between diet and cancer.

    When sugar can increase your risk of cancer

    Eating lots of foods that contain sugar means you’re more likely to gain weight. Research shows that obesity increases your cancer risk. Obesity may cause changes in hormone levels which may also put you at a greater risk of developing cancer. A healthy body weight will be different for everyone, so talk to your doctor about yours.

  5. There is nothing a woman can do to reduce her risk of developing breast cancer.

    There are several things that can be done to reduce the risk of breast cancer:

    • Physical Activity – Be physically active throughout your life and exercise every day.
    • Weight – Try to reach or stay at a healthy body weight. This becomes even more important after menopause.
    • Alcohol – Limit the amount of alcohol you drink to no more than one drink per day.
    • Smoking – Don’t smoke and avoid second-hand smoke. If you’re currently a smoker, talk to your healthcare provider about options for quitting or cutting back.
    • Long-term Hormone Replacement Therapies (HRT) – Limit using the combination of estrogen and progestin menopausal hormone replacement therapy to no more than 5 years; long-term use (beyond 5 years) increases a woman’s risk of breast cancer. But within 2 years of stopping, a woman’s risk of breast cancer returns to average.

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Secure Your Own Oxygen Mask First

20 Jun

Anyone who has ever flown anywhere, knows that before the flight even takes off, the attendants go over the safety check lists and always tell you to secure your own oxygen mask first.

Until recently I never really thought of it as a metaphor for life. There is a reason they tell you this – you can’t help anyone if you are unconscious. It really makes sense, but over the years as a mother, I have used that oxygen mask to hang feed bags from, laundry off of, pretty much everything except for its actual use. I forgot how to take care of myself first.

These past several months my body has been sending signs to slow down, take a deep breath and listen, but I didn’t. I felt the first lump in my breast years ago – shortly after Ladybug was born. I was told it was just a benign breast tumour and it would eventually go away – it was probably just hormonal. When you’re a mama, let alone a mama of a medically complex child who spends her days advocating, making phone calls, booking appointments and driving to all these appointments – it’s easy to forget about or brush off those little lumps and pains that you feel.

Fast forward a few years, and there have been new signs that something isn’t right. I went in for my first mammogram in the fall of 2018. Two more abnormalities were found in my left breast. I had to return twice for further testing. Let me tell you…when you are on your way to Toronto for a concert (that you’re super excited for), and you get a phone call saying they want you back in the next day for more tests – your heart sinks and you automatically think all kinds of scary, sad, thoughts. It sucked!

On the bright side, we had an awesome dinner at a Turkish restaurant, the concert was fantastic, and I got engaged!! So it ended very, very well.

After a meeting with the surgeon last month, it appears from the extra scans, that most of the abnormalities look to be benign (not cancerous), 1 of them needs to be very closely monitored though – so they’re all coming out just to be safe.

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Never again will I ignore those whispers. It took my body screaming at me to finally hear it. Tomorrow, I will be spending my 40th birthday having these lumps removed by a fantastic surgeon.  (the date was purely coincidental)

There is no need to worry or ask how I’m doing right now – I AM ok and WILL BE ok.   This is more of a PSA for all those special needs mamas (or caregivers), to take care of yourselves. Trust me – I know how hard it is, but it is so very important.

As a happy thought/side note, I’m really looking forward to turning 40, and think of this as an “out with the old” type of situation. My next 40 years are going to kick a**! I can celebrate the milestone later – perhaps with some sparkly jewelry or a much needed family vacation. Or both. 😉

Lesson of the day: You only get one body, listen to it, take care of it, and above all else trust your gut! It just might save your life.

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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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