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The R-Word

27 May

A few months ago, while running some errands, I ran into an acquaintance who was in the midst of telling her kids to stop acting like retards as they were playing around and being silly in the store. To me they were just kids being kids.

Typically, I wouldn’t intervene on others parenting techniques. After all nobody is perfect, and parenting is something that is learned over time with each new twist and turn in the road.  However, this time was different – she used a word that to me is very offensive and loaded with discrimination.  I had to say something.  To me the r-word is a personal attack. An attack on my daughter, my husband, myself, and my family.  I felt so protective of my daughter at that moment and the mama bear persona once again shone through.

Without trying to be too judgemental I politely asked her not to use the r-word, both in front of her children and in general. It reminded me of the poem by Dorothy Law Nolte  – Children Learn What They Live. More specifically one excerpt; “If children live with criticism, they learn to condemn.” If these kids grow up hearing the adults around them using these words in the way of an insult whether it be in a joking manor or not, chances are they will grow up using them as well.

She became pretty defensive and replied that her husband’s family is french and she is just used to hearing it, and that she was only joking around with them.  Now it’s been quite a while since I took a french class – high school to be exact, but I don’t ever remember the r-word being used to degrade or insult someone.  I even asked a good friend who happens to speak fluent french every day. Her reply: “I can honestly say that the French generally use ‘retarder’ in the true sense of the word – to hold back… I don’t know of a slang version that is applied in the negative way it is used in English.”  So why did this grown, educated women feel it was ok to use it in the store?

When I returned home I decided to look a little further into the usage of the r-word and came across the site The R-Word – Spread the Word to End the Word.

Spread the Word to End the Word™ is an ongoing effort by Special Olympics, Best Buddies International and their supporters to raise the consciousness of society about the dehumanizing and hurtful effects of the word “retard(ed)” and encourage people to pledge to stop using the R-word.  In 2004, in response to Special Olympics athletes’ call for change, the Special Olympics International Board of Directors adopted a resolution to update the movement’s terminology from “mental retardation” to “intellectual disabilities.”

After taking the pledge to eliminate the demeaning use of the r-word, I came across this video of an adorable little girl sharing why her little brother is so special and why she wants people to stop using the r-word.

Mya and Noah Ban the R-word

Just this past week, a public service announcement titled “Not Acceptable” with Lauren Potter and Jane Lynch from the hit tv show Glee aired during the show the total online pledges grew to well over 200,000.

I took the pledge – will you?

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Lights, Camera, Action!

23 May

A few months ago when my ladybug was still in the hospital, I received an email asking if we would be interested in participating in a documentary and news article about our princess and her journey for the Mac Kids Miracle Weekend.

At first I was excited – what an incredible opportunity to share our story and most importantly shed some light on CDG. Then I started to get a little apprehensive. For the most part I am very open when it comes to sharing everything we have been through. However, there are a few things that I’m still having a hard time talking about especially when it comes to my daughters prognosis, and have therefore chosen to keep it within our family. If I were to agree to have this documentary air everything would be out on the table so to speak.

I pretty much put off replying to that email because I really didn’t know what to do. It was the encouragement from my spouse, family, and another mama who has spent the majority of her daughter’s life with so many unknowns like us, that convinced me to go ahead with it.

Well, that and the fact that the producer and the Mac Kids coordinator  stopped by 3C (Mac children’s ward) to talk to me in person. Not really anywhere I could hide at that point.

Within the first 30 seconds of talking with Kelly the producer of the documentary – I felt at ease and had an instant connection. She had been reading LittleLadybugHugs, and mentioned her shock at the negative remark I received earlier that month stating that her  claws came out a wee bit as well while reading the post. By the time she left I was completely at ease with my decision, and was looking forward to begin filming.  Now to figure out which outfit to put ladybug in so she would be comfortable, but at the same time shine in the spotlight she so much deserves. (To my dismay, wardrobe, hair and make-up were not supplied – not for lack of trying on my part) 🙂

We would begin filming in May with Annette Hamm from CHCH (whom, might I add, is awesome). Fast forward to the moment when Jeremy, Kelly & Aaron from The Shooting Eye Corporation arrived to begin filming and the nerves set in. Between the wonderful crew, and Annette Hamm I felt like I was catching up with a bunch of old friends chatting about the ups and downs of our lives. The wee ladybug did fantastic as well, she was all giggles and smiles – that is until the camera started rolling then she was quiet, looking around, and taking everything in.

The filming wrapped up a couple of weeks ago. It was a wonderful experience – and I will actually miss the team from Shooting Eye. I’m so happy we went forward and filmed the documentary for Mac Kids. I can’t wait to share it with everyone (I’ll post a link to the video as soon as it’s released), but even more so I can’t wait for others to see what I see everyday and that is how incredible my daughter and all the other children with CDG are.

(From left to right – Ladybug, Kelly, Lisa from Mac Kids, and Jeremy)

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Sunshine & Smiles

10 May

I’ve always been fascinated by the effect that sunshine has on people. On a beautiful sunny day people driving have a wee bit more patience, strangers are more apt to pass with smiles on their faces, and everyone’s spirits in general seem to be lifted.   It’s not just adults that seem to come out of their dreary winter shells when the sun comes out – children do as well.

This past Sunday we witnessed this first hand. Ladybug is typically a content little baby. I’ve noticed these past few days (all of which have been sunny out) she has become increasingly giddy and energetic.  After our annual mothers day trip to the local greenhouse, a quick stopover through the Starbucks drive-thru, and a visit with my folks, our sweet ladybug was one little bundle of smiles and giggles. While daddy was cleaning out the garage to clear room for our impending move.  I decided to take ladybug for a ride in her little red wagon. Within seconds of pulling out of the garage and onto the gravel driveway, that happiness shone brighter than the sun.

Seeing that smile took away all the mundane thoughts of having to finish packing, as well as all the upcoming doctors appointments , and reminded me of what is truly important – enjoying every second of life.  Even though at times I know we need the rain to see the rainbows, there is nothing better than having a beautiful sunny day and spending it with the people who mean the most to you.

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The Kindness of a Stranger

27 Apr

Everyone at some point has experienced the kindness of a stranger. Perhaps you were the recipient of the Pay it Backwards coffee initiative – where the person in front of you randomly offered to pay for your coffee. Maybe it was an act of chivalry. In today’s world simple things like holding the door open or offering your seat on the bus doesn’t cost a thing but could mean the world to the person you are doing it for.

This past weekend the kindness I speak of came our way.

I received an email from a woman whom I’ve never met but had been forwarded my blog last year. She wanted to make a donation through a company she is affiliated with to help offset the current and upcoming costs for medical supplies/equipment or other things we might encounter along ladybugs journey.

I was taken aback by her kindness, warmth and generosity, in fact I barely made it through the first half of the email before beginning to cry.

Between that email and the encouraging heart-felt feedback I received after A First For Everything, I know exactly what a powerful and incredibly positive affect kindness can have.

I can’t express how much your support means to my hubby, myself, and most importantly my ladybug.

Thank you.

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Swing of Things

13 Apr

I can’t believe it has been a week since my ladybug has come home from her most recent stay at the hospital. For some reason I was thinking that the transition for both ladybug and I would be a little rough. But, to my surprise, on Monday when I returned to work I jumped right in and felt like I hadn’t even left. My little princess has settled in nicely as well. I’m even finding the bedtime routine a little easier.  Mind you last night at around 03:15 I woke up to loud joy filled giggles. It even took a couple of minutes because I started dreaming that ladybug was in a cute little swing and giggling. Eventually I realized it wasn’t a dream – stumbled out of bed, only to find my princess WIDE AWAKE kicking up a storm, giggling, and making the most wonderful cooing sounds. Even with a diaper change and snuggles there was no calming her down.

Knowing that I had to be up for work in a few hours I opted to put her back in the crib turn on her musical fish tank, ladybug star projector, and tried to get a bit of sleep. Eventually around 05:30 miss ladybug settled down and finally fell back to sleep.

Aside from being a little more sluggish than usual, the lack of sleep didn’t really bother me today. After all it could have been much worse – she could have been up for those hours screaming like she was 2 weeks ago.

When I returned home from work today, I walked over to the bouncy chair, picked up my sweet ladybug and she looked up at me and started talking (more like cooing – but to us it’s talking). Then she started putting more umph into the end of her sounds. Ladybug Chatter 101 – this usually means she wants her soother. I looked down at her and said “hi buggy – do you want your soosie?” She then went quiet, looked up toward me and opened her mouth.

I asked my princess a question and she understood me.

To those who aren’t familiar with our sweet ladybug’s journey thus far it may seem a bit odd that I’m beyond thrilled for this milestone. You see, up until recently we weren’t sure what her hearing ability was (it’s all good), and her vision as of now is quite limited. We know she can see light, and has just started tracking a silver pom-pom that reflects the light, as well as a small globe that lights up and spins really fast. Neurologically at this point everything is a mystery.

So for her to hear me, understand what I’m saying, and open her mouth was a very big deal.

There are no words to describe the way I felt at that very moment. My heart warmed, my eyes filled with tears, and that hope that I hold so dearly for her has come through. It truly was a magical moment, and I know they are only going to get bigger and better now that we’re back into the swing of things.

And…..we’re home.

7 Apr

These past few weeks have been a blur – so many tests, so many questions, and even more unknowns. In the first couple days ladybug was nearly whisked off for surgery for signs of pneumatosis intestinalis . (air within the wall of the small or large intestine which could cause perforation) No one knew how it happened, or if it could happen again. Luckily the cocktail of antibiotics worked, surgery was no longer needed, and  feeds were slowly reintroduced.

The next concern was possible seizures; one doctor said she had no doubt – it is absolutely epilepsy and we would begin treatment the following day. The following day a new doctor started the rotation and wasn’t so sure. He decided that he wanted a new Video EEG done to compare with the one we had this past October. Which makes sense. An order was put in for a video EEG to be done urgently. Herein lies the issue – the children’s hospital only has one video EEG machine, is short-staffed, and overbooked, so urgent meant a 1 year wait. Aside from being outraged that my daughter who was obviously having seizures was once again unable to get a much-needed test for a proper diagnosis, for the first time I felt at a loss. Should I push to be referred to Sick Kid’s hospital in Toronto or London? Thanks to Dr. Ajay Nayar, I didn’t have to. His compassion and persistence enabled us to get a regular EEG the next day.

The test couldn’t have run more smoothly. Ladybug did every single thing that concerned us the most, all of which was caught on the EEG. After 2 hours we headed back to the room and waited. The neurology resident came up and said that the team would like to come and speak to me about the results the following morning.

The next morning I waited – 09:00, then 09:30, then 10 still waiting, watching the clock, peeking into the hall to see if they might be coming. Finally at 10:30 The neuro convoy arrived. Dr. Nayar had asked me earlier to be paged so he could join the meeting and get a better idea of what was happening. He is the type of person whose mere presence puts you at ease. You see when you have all these doctors consisting of clerks, residents, and the big guru surrounding your daughter’s bed, it becomes quite overwhelming. I can’t begin to explain how reassuring it was to have Dr. Ajay Nayar there for us. He, like Dr. Brian Levy continuously went the extra mile to care for my daughter and exudes empathy, compassion and understanding.

I was told that ladybugs EEG had improved somewhat from October. My translation is that it had transitioned from a constant chaos to a more controlled chaos showing signs of maturation in the brain. There was definitely seizure activity noted all over her brain, but seemed to be more focused in the back.

I was given the option of putting her on an anti epileptic medication, the side effects could include but are not limited to – Kidney stones, liver failure, cognitive impairment, and the inability to regulate body temp.

However, what they couldn’t tell me was if this medication would be able to help my baby.  I couldn’t justify opening up Pandora’s box to a plethora of new and potentially deadly side effects for anything less than an absolute. I decided against starting her on these meds. Right now the seizures aren’t putting my ladybug in danger, and with no real proof that it would make a difference ,why take the chance.

We’ll be keeping a watchful eye on ladybug to see if anything changes, as for now, I am enjoying having my beautiful, increasingly happy baby girl home.

More Denial Than Shock

31 Mar

I’ve heard many talk about the 7 stages of grief not only when it comes to a loved one passing, but also when you receive news that is life changing.

For 15 months I’ve been concerned about my daughter having potential seizures. She has always had abnormal eye movements, and gazing periods. This past summer we had a video EEG done which showed a Hypsarrhythmia (abnormal spikes in the brainwaves). The first thought was that it was Infantile Spasms so she was put on a med called Vigabatrin. All I remember of that moment was my sweet little girls heart rate dropping quite low, and being in an almost comatose state. A second EEG showed that the Hypsarrhythmia hadn’t improved and I told the docs I want my ladybug off those drugs.

Fast forward to our current stay at the hospital. I wanted to get neurology on board right away. Especially considering the “episodes” that ladybug is having seemed to be more and more frequent. After speaking with neurology the first time it brought me back to when we were waiting for the CDG diagnosis. Part of me hoped that the test would come back positive so at least we would know what was going on.  Then the other part hoped that they wouldn’t find anything.

Today we got an answer – my sweet little ladybug is having seizures. Any CDG parent will tell you that seizures are one of the main things you pray your child will be spared of. Because they are more common in type 1, I never really thought that we would have to worry about this.

I find myself, strangely enough, in denial. It’s crazy considering I’ve been pushing for over a year to see if these “episodes” were seizures. I keep thinking to myself, maybe they are wrong. Maybe it’s just a quirky little eye movement thing that she’ll have going on. Maybe it’s a new form of super hyper nystagmus and we’re the first case ever. It can’t be seizures, she’s still a baby, she already has so much going on with her little body.

Tomorrow we speak with the neurology nurse who will explain the new medication called Topamax that ladybug will likely start mid morning.

So now we wait and hope that these meds will help, and won’t keep my happy baby girl captive under a sedated spell – but release her from the one that the seizures have held over her for the past 15 months.

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A First For Everything

28 Mar

The sun was shining, snow melting, a sense of calmness and ease was is in the air.

Fast-forward 1 hour it’s now 8am I’ve been sitting in the McMaster above ground parking lot for 15 mins waiting for a spot to open up, finally you see a sunbeam glimmering down on that one person at the pay station, track their every move to their car ,and signal for that oh so important parking spot.

As the person pulls out, a youngster (early to mid 20’s I’m guessing) flies in to said spot jumps out and as he walks by my large enough to visibly see SUV proceeds to say “uh sorry I didn’t see you there.” Not the end of the world, it’s only a parking spot but when you’re trying to see your baby it was enough for this mamma to begin to tear up.

Needless to say ,shortly after another spot opened up and all was well with the universe again.

Up the stairs, past the nursing station, greeting our fav nurses along the way, I finally arrived to a very content little ladybug. Who might I add was watching treehouse – or staring in the general direction of the light and buzzing of the 1980’s grey t.v. dangling off that squeaky arm.

It was nearly 09:00 and I had about 1.5-2 hours until the team came to our room for rounds.

I had just finished sending off an email to update my company on LB’s status and my attendance or lack there of  – when I got a new message.

Now I’ve been writing this blog for nearly 8 months and have always received such warm and positive feedback. However, as in life there is usually one person who won’t agree with things. As they are entitled too. I welcome feedback good or bad but this one actually hit a sour spot with me – I/the things I write are only trying to gain attention and sympathy from others. (Not a direct quote – this one has been rated pg for our sensitive viewers – but you get the gist)

So here I am after finally settling into my day at the hospital, starting to shake and become visibly upset over a comment that a meer acquaintance had made. I get that not everyone agrees with the blogging world or sharing your life online for everyone to read, but, this blog isn’t for them it’s for me. I started this blog as an outlet. An outlet for me to share our journey, and be able to openly talk about what our life is like from day-to-day. All with the hopes of reaching someone who might not know what it’s like spending days on end in the hospital pushing for the best care possible for your chronically ill child.

The attention seeking part I couldn’t agree more with. You’re damn right I want people’s attention! I want the attention because I want people to know about my daughter, and the fact that she has a rare disorder known as Congenital Disorders of Glycosylation – CDG. I want the attention in order to bring awareness to Canadians and the world that Canada is the only developed country without a rare disease policy in place. I want the attention to be able to help other families who are going through the same thing but don’t know what to do or who to turn to. So YES I want your attention!

Now “demanding sympathy” that was the part where I had to retract my claws, and remind myself that this person really doesn’t know me, and has never had to walk a single step in my shoes. Again, I knew that this could happen when I began writing in a public way, not everyone will agree with the things I say or the way in which I say them. BUT, for that one single itty bitty negative comment I have hundreds more that don’t see my writing as a ploy for your sympathy.

Believe me the last thing any mother of a child who is chronically ill, or has a rare disorder/disease wants is someone elses sympathy. Maybe some empathy from time to time, but I don’t want you feeling sorry for me. I don’t feel sorry for myself – sure it’s a tough life but I chose it and I wouldn’t change one single thing.

I love my daughter more than anything else in this universe, and let me tell you one bad seed isn’t going to stop me from continuing to keep your attention, and I truly hope that each and every one of you will be able to take away so many wonderful things from the journey of my little ladybug.

I encourage all of you to please leave a comment below.  Whether you have had negative comments directed at you, or on a blog you may have written, I’d really like to open the lines of communication on Little Ladybug Hugs and hear your thoughts. Just scroll down to the bottom of this post and leave your comment.

Deja Vu

25 Mar

Earlier this week we ended up back in the hospital with ladybug. After being discharged last weekend she just became more and more lethargic. She would only stay awake for a few minutes at a time and was like a little wet noodle when I tried picking her up.

I’m quite glad we did because her test results showed she had an infection of some sort. They thought perhaps it could be meningitis – two attempts at lumbar punctures were made neither time they were able to be successful. (Because her blood work didn’t suggest meningitis this was taken off the table.) She was hooked back up to an iv line and this time they added antibiotics.

Within a few hours of us being back in the hospital my lil bug started having these screaming fits. I can only describe them as being similar to contractions. They would come and go in waves and each time they seemed to be getting worse. Typically when she is upset or not feeling well a snuggle from mommy always helps. No matter what I tried, or how close I held her nothing seemed to ease her pain.

The docs had no idea what was causing the pain but knew that it was originating in her tummy.

Here is where the deja vu set in. 8 months previous ladybug was admitted into the hospital initially for a mysterious infection, then came the GI bleed and a source could  not be found.

Were we really going through this all over again?

Aside from low white blood cells, and high liver enzymes everything else appeared normal. We always joked about how she likes to keep everyone guessing I’m beginning to wish this wasn’t the case.

An x-ray was done on her tummy and there was one finding in particular that was quite concerning (I’m not really going to go into details until we know for sure). Because of this the docs decided to give her a lovely little antibiotic cocktail a mixture of 3 different types with the hopes that this would resolve the findings without getting surgery involved.

The pain has continued for most of this week – not even morphine was helping. Several repeat x-rays were done and finally today a very slight improvement was shown.

As great as it was knowing that the x-ray results were improving – the best indicator to let us know my daughter is on the mend was that she was smiling today for the first time in weeks.

She still isn’t being fed anything just to rest her little tummy, but is on TPN (vitamins and nutrients via the port-o-cath). Possibly by early next week she will start slowly on pedialyte then gradually resume her regular feeds.

We have noticed that her Nystagmus (involuntary eye movement) has become more frequent and lasts longer so neurology should be coming to see us and setting up a second video EEG on Monday. Which is really good considering we’ve been trying to get in to see her neurologist for months now and our appointment keeps getting pushed further and further back. I can’t begin to describe how frustrating this is, but that’s neither here nor there.

I’m so grateful for the continuous support from everyone. I’m constantly looking to our CDG family for advice and possible answers for everything that we’re going through, and even though at times I may feel like I’m exhausting that fabulous resource – no one else ever does.

Like before, it’s a day-to-day process and because of the CDG that process may take a wee bit longer but eventually we will get there.

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Battle Of The Flu Bug

21 Mar

This past weekend was supposed to consist of  the hubby’s birthday celebration, house shopping, and starting to organize and de-clutter for the move. Never did I expect to spend it in the hospital with our little ladybug battling the flu.

It started Friday morning with vomiting. At first I thought it was just the reflux acting up but by the evening she started to have a fever and lets just say we began going through many, many diapers.

By Saturday at noon her fever still hadn’t broke, and she hadn’t had a wet diaper in 24 hr. As fast as her feed was going in it was coming out the other end.

Off to the ER we went. Typically I dread the ER – sitting in an over crowded room, trying to find that one comfy spot on the plastic chair, all the while avoiding the leaky hacking child sitting next to me wanting to grab my daughters pink musical teddy. However, on Saturday it was like the skies opened up and the health care gods shone down on us. We arrived at the ER, registered, were seen by the triage nurse and into a room all in under 10 minutes.

The doctor was fantastic, very attentive and in good spirits. Even did a little dance when I told him my ladybug has a port-o-cath (permanent line under the skin for iv access).

By the time we arrived ladybug’s fever was up to 104 F (40 C), an iv was hooked up, fluids were pushed and labs came back normal (aside from elevated liver enzymes), so she was able to have some more Tylenol to help break the fever. Children with CDG typically have higher liver enzyme levels, simple viruses like the flu or common cold can quickly elevate these levels and induce liver damage or failure – Tylenol can speed up this process because it is absorbed through the liver. Which is why we have to watch the amount given. Thanks to my CDG family and their advice and support – I  now know that having high liver enzyme levels is fairly normal and while we have to keep an eye on it I shouldn’t have an emotional melt down and enter panic mode when her levels are elevated.

As odd as it might sound to most, it was almost like a rite of passage being in the hospital for dehydration from the flu. For the first time my ladybug was like every other child. We weren’t in the hospital for GI bleeds, or surgeries, or any other CDG related issues. We were there for the flu. Don’t get me wrong I’m not downplaying it by any means, she was very dehydrated and had a dangerously high fever, but for the past 3 days we were  only battling the flu. I didn’t think of feeding pumps overfeeding her, or a lab tech putting a very important blood sample in the wrong colour vile the previous week, everything disappeared. For the first time ever I could finally relate to how my daughter was feeling, I offered her what I knew always helped when I was little with flu and that was lots and lots of cuddles with mommy.

I’m sure we’ll cross paths with many other viruses, after all it’s all part of a being a kid. It’s just really nice to know that she can completely heal from the flu, and even though it may return down the road. Right now we’re in the home stretch and recovering after our first battle of the flu bug.

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