Archive | March, 2011

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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Sweet Little Angels

13 Mar

Have you ever had the feeling when your heart sinks, your skin goes clammy, every sound around you disappears and those one or two brief seconds slow down to feel like eternity?

For me this is exactly what happens when I learn that a child with CDG has become a sweet little angel.

This past February alone 3 wee ones from our CDG family passed away.

As much as I try to always be positive and think on the bright side I can’t help but think….. I don’t even want to bring myself to write it.

Once the shock and feeling of the news being too close to home begins to subside – a feeling of guilt closely follows.  How could I possibly write about how my ladybug now has 7 teeth or that she can roll from her tummy to her back, or she has tracked a toy for the first time in her life, knowing that another mother whose child had the same disorder will never get to experience this again.

I couldn’t and don’t ever want to imagine what it’s like to have to lose my baby. Because CDG is so uncertain that teeny little thought always seems to be in the back of my mind.  I try to hide it in the furthest corner under all my happy memories but when a little one with CDG passes, that teeny little thought manages to push its way through.

The only thing that sends it back is holding my baby girl, listening to her contagious giggle and knowing that all those who have passed are no longer suffering and are now playing hand in hand, while looking over my ladybug and every other child with CDG.

I thank the heavens every day that I have my daughter, and encourage every parent to hold their own little miracles a little closer and enjoy every precious second as I do.

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Rare Disease Day

1 Mar

Up until this past year February 28th meant nothing more than the end of the month.

In early October 2010 when my daughter was diagnosed with Congenital Disorders of Glycosylation (CDG) that changed. February 28th marks Rare Disease Day. A day to bring awareness to all rare diseases around the world.

Many brought awareness to Rare Disease Day by keeping their headlights on all day while driving to “Shine The Light on a Rare Disease”, The Global Genes Project initiated a wear your jeans to work day to support Rare Disease Day, several U.S. States issued proclamations for Rare Disease Day, and many families shared videos of their children and loved ones to show the importance of raising awareness for rare diseases.

I was recently sent an article about an amazing man – his name is Simon Ibell. Simon has a rare metabolic disorder known as Hunter Syndrome.  Simon had recently biked 500km in 10 days and raised an incredible $250,000.00 for Hunter Syndrome. Not only is he a true inspiration he is also Canadian.

Simon Ibell has started a foundation known as the Ibellieve Foundation – he spent Rare Disease day in Ottawa to help change the fact that “Canada is the only developed country with no health-care policy to support rare diseases.”

As the mother of a little girl with a rare disorder the following excerpt from an article at Healthzone.ca titled Health-care crusader battles to ‘fix the broken system’, really resonated with me. It explains how behind Canada is in recognizing and treating rare diseases.

“Despite affecting one out of every 12 Canadians, rare diseases get little attention and funding.

Durhane Wong-Rieger, president of the Canadian Organization for Rare Disorders, says Canada is 25 years behind Europe and 16 years behind the U.S. in how it handles rare diseases.

“We don’t even have an official definition of rare disease,” she says. The United States National Institutes of Health define a rare disease as a condition that affects fewer than 200,000 individuals in the U.S.

A standard definition for Canada would help identify the number of rare diseases in the population and guide decisions on drug access. Right now, without a national strategy, there is little support for Canadian drug companies to develop treatments and little financial incentive for U.S. companies to bring their drugs to Canada, Wong-Rieger says.”

I encourage everyone to take the time to read this article, it really was eye-opening for me on so many levels.

So here’s hoping that come next February when you’re thinking about whether or not March will be in like a lion and out like a lamb, or that it’s nearly tax time – you will take a moment to remember that the very last day of the month (February 28th) is Rare Disease Day.

 

[Megan Ogilvie, http://www.healthzone.ca, Health-care crusader battles to’fix the broken system’, http://www.healthzone.ca/health/article/945897–health-care-crusader-battles-to-fix-the-broken-system, (February 27, 2011)]

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