1 in 7 Billion

23 May

7 Billion  The current worlds population (and growing)

3   The number of incredible children in the world who share a new type of CDG.

1  The number of girls in the whole wide world who have this new type of CDG.

That 1 girl is my beautiful Ladybug.

A several months ago we received an email that essentially changed our lives.  When Ladybug was first diagnosed with CDG we pleaded with the Ministry of Health (Canadian Government) to cover a genetic test for her. Their response was and I quote “what difference will it make”.  The governments thought was it won’t change her prognosis so what’s the point.

I was devastated that our “wonderful”, “fabulous” Canadian health care system had the gall to say that. Many thoughts crossed my mind – write to local and provincial politicians, call this woman at the Ministry of Health and tell her exactly why it was so important.  Not long after I got my first taste of what it would be like to fight for my daughters rights,  a post was made in a CDG group I belong to.  The Sanford Burnham Institute was asking us to contact them if we would be interested in further testing to discover our children’s subtypes. It’s so cliché , yet so true … “ When one door closes, another opens ”

Now I had to try to convince our genetics team to take samples and send them to California. Fortunately our entire team at Mc Master Children’s hospital are phenomenal so they didn’t even give it a second thought.

Fast forward many, many months and the email arrived. The initial email was incredibly cryptic and read something like. We’ve made a discovery. stop.  It’s a pretty big deal. stop. Can’t say too much now but will let you know soon. stop.  Of course I might be exaggerating a teeny tiny bit. But that’s what it felt like.

The first portion of the HUGE news was that Ladybugs little friend in Jolly Ol’ England was indeed the same subtype as she.  DUH…..yes I just said duh! We (being the two parents) have felt this in our hearts the moment we began chatting and sharing pictures of our kids. Then there was a third little boy who was also the same subtype from the USA.

Here is a picture from the Sanford-Burnham Science Blog – The Beaker that featured our 3 special kiddos. The new CDG finding was also published in The American Journal of Human Genetics and Science Daily to name a few. If anyone would like to see these please feel free to email me.
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The next portion of news was that these three beautiful children – whom I love to bits, have a brand new type of CDG. CDG SLC35A2.  This explanation will require a blog post of its own which will come soon.

It was and still is A LOT to take in.  There were quite a few new developments on top of how rare she really is that I’m still trying to digest, and when the time is right I will share them with everyone.

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Purple Day

26 Mar

Today, March 26 2013 marks the 1st official PURPLE DAY in Canada.

Purple Day 2013

Purple Day was first recognized as the official day for epilepsy awareness in Canada on June 28, 2012, in an Act of Parliament put forward by the Hon. Geoff Regan, M.P. for Halifax West. Bill C-278 met with resounding all-party support and became the only legislation of its kind in Canada. The Act demonstrates meaningful support to the 300,000 Canadians living with epilepsy and helps to reduce the stigma and discrimination that is often associated with the disorder.

You can read more about this amazing day in Canada here at the Canadian Epilepsy Alliance website.

For those of you who aren’t familiar with Purple Day, it was created by a young girl – Cassidy Megan from Nova Scotia, Canada in 2008.  Cassidy created the idea of Purple Day to share her own struggles with seizures and to get people talking about epilepsy.

Epilepsy affects over 300,000 Canadians and over 50 million people worldwide. My little ladybug is one of those people.

I’ve not really written much about her seizures, but couldn’t think of a better day than Purple Day to begin.  One of the characteristics of many children with Congenital Disorders of Glycosylation CDG is epilepsy. When most think of seizures they tend to think of what is known as a Tonic Clonic or Grand Mal seizure which is often depicted on tv and in the movies. Truth is there are dozens upon dozens of types of seizures.

Ladybug has what are known as Myoclonic Seizures. (myo meaning “muscle”, clonic meaning “jerk”) These result in an increase in muscle tone.   Those suffering from myoclonic seizures typically react as if hit by a single jolt of electricity.  Usually in Ladybugs case her arm or arm and legs stiffen up and go straight out and her eyes are wide open and look up and to the left side.  These “episodes” happen anywhere from 1 to 10+ times a day, every day.  As each person is different it is a big gamble as to which medication will work.  Initially the doctors tried one called Vigabatrin. We were told it would make her a little groggy.  That was a huge understatement.  Thank heavens she was in the hospital because after 2 doses she went into a coma like state and we were unable to wake her up for several hours. She has since been taking Keppra (Levetiracetam) and the dosage has been slowly increased over the past year and a half. Up until this past month I hadn’t really noticed a difference in the quantity or length of the episodes, I say this because with this last itty bitty med increase she is down to under 3 noticeable seizures a day.

Myoclonic seizures are often only one manifestation of a mixed seizure disorder, and they can be very serious. For this reason we see Ladybugs Neurology team every 4-6 months and monitor and record her seizure activity daily.

Along with the decrease in noticeable seizures, Ladybug is also healing very nicely following her port removal and Mic-Key insertion two weeks ago. I must also add, that as of today she is  a whopping 20 pounds and 28 inches in length!!!!  Even though her little princess diva attitude is becoming more prominent as days go by, I’m so happy for each and every one of these little milestones.

Ladybug in all her glory wearing a purple dress for Purple Day.

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Pembe Bear

12 Mar

Tonight Ladybug helped me pack her very special hospital bag.  The bag was filled with necessities like diapers, wipes, pj’s, and a cuddly blanket. There was one more item in this bag that is by far the most important – it is a very special little bear known in our house as Pembe Bear.  Now Pembe bear has been with Ladybug since she was first-born, it is always by her side during each and every hospital stay, and even has its own medical bracelet to match Ladybugs.

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Just in case you were wondering, Pembe is Pink in Turkish.  It was one of the first words I picked up when I lived in Turkey, well that and Otur which means sit down.  As a kindergarten teacher this came in very handy with a class full of 4/5 year olds.

Back to Pembe Bear – PB has never missed a hospital stay or surgery and tomorrow Ladybug is scheduled for surgery.  Her PEG G-Tube will be replaced with a “big girl” Mic-Key G-Tube, and if all goes well and they are able to find a good line Ladybugs Port-a-Cath will be removed completely. If they aren’t able to find a good line there is a chance a new port-a-cath will be put in its place. I’m obviously hoping for the first.

I will be sure to post updates after the surgery.

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On The Board

26 Feb

For a few months I’ve been debating on how to title this post.  I love the clever use of words, and my initial thought was “3+1=4″.  Then I realized that if I use this title my phone and Facebook account would be inundated with messages of congratulations/are you pregnant?  I’ll nip that theory in the bud right now to say that I am not with child.

Not exactly that is.

Before our little Ladybug was born we were in a very unsure place about fulfilling our dreams of becoming parents.  After back to back  miscarriages I questioned whether I’d be able to carry to term.  We began to explore adoption both within Canada and around the world.  Lo and behold, shortly after I became pregnant – and against all odds gave birth to a very special little Ladybug.

The thought of having multiple children never really left and as Ladybug gets older, I’ve begun to see how much she enjoys being around children.

While looking into adoption once again we dove into a world I never thought to explore – but one that would be the perfect fit for our family.

Fostering.

There are so many children who need temporary loving, stable homes – I knew it was the path for us. I will be honest it has been a long….very long path to bring us here.  Nearly a year of training courses, interviews, meetings, and diving into our pasts with a fine tooth comb. Yesterday, February 25, 2013 I received the call that we are officially “On The Board”.  I’ve been yearning to hear those words for months, and couldn’t help but blast some music and dance around the house with Ladybug in celebration.

On the board means exactly that. Our names have been placed on a big board stating that we are available to take a child immediately. I’ve been preparing/child proofing our home for several months now, guest rooms have been moved around and a room fit for a princess or prince was created. I’m incredibly excited to watch Ladybug interact with her new sibling(s), and think it will be a fantastic experience for her and the children to learn about tolerance, acceptance, and love.

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I also want to send a huge thank you to our family and friends who took the time to write references, watch Ladybug, and share in our journey thus far.  We are who we are because of all of you.  I especially want to thank a dear friend Nicole. Nic, I’ve known you since we were “Rockin’ Robins” and am so grateful for the guidance you’ve given and the willingness to receive numerous text messages and emails before and during the process of becoming a foster parent.  Thank you.  xoxo

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Feeding Tube Awareness Video

10 Feb

To kick off the 2013 Feeding Tube Awareness Week, I would love to share this official video created by The Feeding Tube Awareness Foundation.

My favorite quote is about formula getting on the ceiling and being able to laugh about it. It’s nice to know we’re not alone in this.

Can you spot Ladybug in the video?

Official 2013 Feeding Tube Awareness Video

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Feeding Tube Awareness Week

9 Feb

This coming week which is February 10-16th, 2013 is

FEEDING TUBE AWARENESS WEEK!

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Feeding Tube Awareness Week was first launched in February 2011 By the Feeding Tube Awareness Foundation.

Each year the week focuses on a few topic areas designed to give parents, caregivers and tube feeders the opportunity to share their experiences with tube feeding with friends and family through social networking sites, blogs, viral and traditional media. Increasingly, parents and siblings have been using Awareness Week to give presentations in their children’s classrooms.

Long before the CDG diagnosis came to light, Ladybug was diagnosed with failure to thrive. Failure to thrive (FTT) is a term given to infants and children who do not meet the growth rate that his or her peers meet. Yes, it is a bit of a generic description but one that we dealt with for quite a while. Basically Ladybug was showing signs of severe reflux or GERD(Gastroesophageal Reflux Disease), and was refusing to eat anything. It was at 1.5 months that Ladybugs first feeding tube was put in.  The lovely NG Tube (Naso Gastric) This tube runs directly from the nose to the stomach.

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What started as a quick fix to help her gain some weight became an everyday part of our lives.  The NG tube truly was a lifesaver for Ladybug, and for the first few months she didn’t bother with it.  That is until she learned it only took a split second to pull it out. It didn’t matter how we taped it, what type of tape we used, or even how much tape we used, those teeny tiny fingers always managed to pull that tube out. After numerous trips to the ER to have the tube put back in, we began to discuss with the doctors about a G-Tube.  The G-Tube (Gastric Tube) is surgically placed into the stomach. Seeing as Ladybug still wasn’t eating orally and was beginning to throw up often it was the obvious next step.

The G-Tube was inserted in October 2010. Ironically this occurred the same month she had a GI bleed, bowel resection, port insertion and the CDG diagnosis.  October 2010 was a very emotional month to say the least.

Even though Ladybug is slowly starting to try food orally, sippy cup with water, Breton Crackers, squash and chocolate, the G-Tube is her sole source of nutrition. Thanks to the G-Tube and an amazing dietician, she is also steadily gaining weight according to her very own growth curve. The other great thing about Ladybug being a “Tubie” is that her best friend has one as well.  ”Bean” the other Diva of 3C at Mac Kids is always excited to see Ladybug and compare their identical feeding tube clamps.

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Another tubie mom couldn’t have said it better when she posted that she would rather questions about our kiddies tubes than stares.  I truly LOVE when little kids look at Ladybugs feeding tube attached to a little backpack inquisitively.  I can only imagine what their honest minds are thinking.  I always give them a smile if only to let them know it’s ok to be curious.  The teacher in me can’t wait for a chance to explain what it is not only to the kids but also the parents.  If I can pass on anything it’s for adults to remember the inquisitive little child within. Don’t ever be afraid to ask questions – the majority of people are more than happy to answer them.

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International Day of Acceptance

20 Jan

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January 20th marks the
International Day of Acceptance.

A day to educate, shout from mountain tops (only if possible), tweet, blog, and create Facebook pages on how we can achieve social acceptance and awareness of disability. A day to honour the late  Annie Hopkins, founder of 3E Love and creator of the International Symbol of Acceptance.

According to the Oxford Dictionary, the definition of Acceptance is as follows: the action or process of being received as adequate or suitable, typically to be admitted into a group.   Adequate or suitable? Not exactly what acceptance means to me, and it’s not what acceptance means to the incredible people at 3E Love. Truth be told I much prefer the definition below.  

What is acceptance?

Acceptance is an Empowered movement that Educates others to Embrace diversity and Love life by seeing beyond abilities.  

Friends, tell the world you embrace who you are; a person with social rights, who has an opinion, who has interests, who has goals and who loves life; a person who is empowered to make a difference in the world and not be without a voice in society. You are not living disabled, you are living.

To our supporters, join us in telling the world that you are accepting of people with disabilities. As our parents, siblings, relatives, spouses, children, lovers, coworkers, teachers, personal assistants, friends, and anyone else – you also have a role in our culture and life. And you can have an impact on the future if you demonstrate your acceptance to others.

Let’s join together to:
Embrace diversity. Educate your community. Empower each other. Love life.


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 The 3E Love Symbol was designed by Annie Hopkins who also cofounded the company with her brother Stevie Hopkins.  Both Annie and her brother Stevie have Spinal Muscular Atrophy Type 2. Annie passed away from complications in 2009. Stevie has continued to guide the company in honour of his beautiful sister Annie.

 

Meaning of Symbol

3E Love’s registered trademark, the “International Symbol of Acceptance” also known as the “wheelchair-heart logo,” is the drive behind much of the company’s goals and products. It is a symbol of society accepting people with disabilities as equals and a symbol that people with disabilities accept their challenges and even embrace them. By replacing the wheel with a heart, the stigma of the wheelchair is also removed, and it can be a symbol for people with any disability or impairment. It represents the person, not society’s perception of him or her.

The 3 E’s in their name are powerful to everyone including myself on so many levels. Embrace, Educate, and Empower.

Please take a moment to check out their website 3E LOVE.

If you like shopping then you will LOVE  the 3E store!  I already see several purchases from there in the near future. I’m thinking a cool decal for Ladybugs Squiggles, and a pink tee for this mama.

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