Archive by Author

2 Years or 24 Months?

31 Aug

In a few short days my little ladybug will be 21 months old. From the moment I found out I was pregnant I stepped onto the most crazy rollercoaster I might ever experience. I am truly blessed to have such a beautiful, vibrant, full of life, little superstar diva.

Ladybug is slowly starting to eat food orally – she especially enjoys foods she can chew. The most recent achievements have been Mum Mum rice rusks and this past week was fresh blueberries in the safety of the little Nuby Nibbler. It is fabulous, allowing her to eat without the risk of choking.

Ladybug is also beginning to grow out of her 18 month clothes. I will have to learn how to hem pants because the 24 month ones could fit an entire second child. Along with getting extended use out of clothes we will most likely get a 3rd winter out of the travel car seat.

Even though at times the setbacks of ladybugs development due to CDG can be disheartening, I take great comfort in watching all the moms chase after their toddlers who are pulling hair, hitting and ripping everything off the shelves whilst I’m snuggling and rocking my 2-year-old in my arms.

Along with these perks come the questions. Wow, look at how long her hair is – how old is she? Aww she is so cute – my grand-daughter is 6 months is yours around the same age?

Thus far I have given ladybugs age in months. For some reason no one seems to question how tiny she is when I say she is almost 21 months old. I’ve even had a clerk at a store comment on how big she was for her age. I tried with all my might not to giggle out loud, because she obviously didn’t put 2 and 2 together that my itty bitty ladybug in the travel car seat is a few months shy of being 2 years old.

For those that do pick up on her age I either get the look of puzzlement or they inquire as to why she is so little. As I’ve said time and time again I love when people ask questions. It gives me the opportunity to tell them about CDG.

Eventually I will transition to say her age in years as opposed to months, after all I can’t exactly tell people when ladybug turns 6  that she is nearly 72 months old. How crazy would that be.

For a little ladybug who defied the odds to survive past infancy it should be HUGE celebration when she reaches 2 years, and come 3 years old – look out Party Mamas.

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Happy 1 Year Little Ladybug Hugs!

23 Aug

I can’t believe it has been a year since I started writing Little Ladybug Hugs and shared our journey for the first time in Beginnings.

When I began writing that first post, ladybug was very ill in the hospital with a hide and go seek GI bleed. She was very fragile, had needed several blood transfusions, was in and out of the pediatric ICU, and the worst of all was that I didn’t know what to expect from one day to the next.  Fast forward to today August 23, 2011 and in the span of a year the cause of the GI bleed was found and in turn a portion of her ulcer covered bowel was removed, a confirmed diagnosis of CDG type 2x was given, we’ve become a part of a wonderful and supportive new family, and ladybug is happy and healthy (for her) at 15.5 lbs, 24″ in length and nearly 21 months old.

Through out this past year one thing has remained consistent and that is my ladybugs smile. She somehow managed to smile through un-imaginable pain, through many tests and procedures, and on her good days and bad.

It is her smile that has helped me through this past year. No matter how tired or cranky I become after weeks of no sleep or hours upon hours of fighting for funding for an accurate feeding pump, I just have to look at her calming smile and everything else disappears.

Thank you for all the support and encouragement on our journey thus far and the support of Little Ladybug Hugs. There has been overwhelming amount of positive feedback, and of course it wouldn’t be life with out a bad apple here and there. If I have learned anything this past year it is that life is far to fragile and short to let the bad apples and sleepless nights get to you.

Happy 1 Year Little Ladybug Hugs!  I can’t wait to share our adventures and triumphs to come in the next year.

CDG Awareness

12 Aug

It is with great excitement that I share with everyone the new international CDG symbol. It will now be used to promote CDG awareness around the world.

To me the coloured hands are symbolic of the many different characteristics and faces of CDG. The hands joining into the shape of a heart represents the unity of all CDG families coming together.  Here is another description for our new international symbol from a CDG mom “the little colorful hands represent our little angels and how happy they are and the heart shape is our love for them and the CDG obviously represents their syndrome and the fight and struggles we share with our children”. The best thing about this symbol is knowing that nearly all of the CDG family had a part in picking the one symbol that would open the worlds eyes to this disorder.

I am also thrilled that there is now a CDG Online Store.  You have the option of selecting your currency and all orders can be shipped worldwide.

If anyone would like to have a copy of the CDG symbol please feel free to contact me.

The sky is the limit now. I am also looking into some customized promotional items that I can have the symbol put on, not only help raise CDG awareness but to help raise funds.

None of this would be possible without the hard work and dedication of Andrea a wonderful mom from our CDG family. She not only organized a poll to vote on the international CDG symbol (which was designed solely out of the kindness of a volunteers heart), she also set up the online store. Thank you.

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Going Global

31 Jul

3 months ago I was contacted by ladybug’s geneticist asking if I would mind if her team could present ladybugs case at this years International Congress of Human Genetics and the American Society of Human Genetics meeting. Dr. Li (geneticist) mentioned that these are usually held separately but this year they are combined, “so it will be probably the largest meeting in human genetics ever”.

This would be a chance for geneticists from all over the world to learn about and discuss CDG.  I didn’t even hesitate to say yes – after all this is exactly the type of attention I want to bring to CDG.  The more doctors who know about it, the more diagnosis can be made, the more awareness can be raised, which leads to more funding to find the mutations in the genes and perhaps one day a cure.

The best part was that it wasn’t just ladybugs case that would be presented, Dr. Li and her team wanted to combine it with an adorable little boy from England.

I first came across a picture of this young lad when I was researching CDG before we received a confirmed diagnosis. I was blown away by the similarities between him and my princess.  Both have short long bones, feeding difficulties, and even the same cute little button noses. As this past year has gone by I’ve grown quite close to this fabulous family, exchanging gifts and often chatting online about our CDG type IIx wee ones throughout the week.  To this day we are still amazed when we look at pictures, and have a very strong feeling that these two beautiful children may have the same undiscovered subtype.

We’ve recently found out that the abstract, (in short – a brief summary of the two medical histories) has been approved.

Which means that this October geneticists from across the world will gather in Montréal, Canada, and will learn about two very special children and their even more special disorder.

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Swing Fore Dreams

21 Jul

Although my golf experience doesn’t exceed a couple of company tournaments and mini-putt, I was truly honoured to have been asked to be a part of the 3rd Annual Swing Fore Dreams Charity Golf Tournament which was held on July 17, 2011. The proceeds from this tournament will directly benefit McMaster Children’s Hospital.

The tournament was held at the Carlisle Golf and Country Club. We opted to pass on the golfing as it was far too hot for ladybug – who might I add rocked her pretty pink party dress and shades, and instead joined for the dinner and awards afterwards. Small side note the dinner was fabulous!

As soon as I walked into the dining area with ladybug in tow we were immediately welcomed by the 3 amazing guys who put the entire golf tournament together for the 3rd year – Ryan DeCaire, Patrick Brennan and Christopher Ferguson. I don’t think I have ever come across a more caring, generous and empathetic group of young men in my entire life. This feeling was certainly shared with so many that attended the tournament including the local MPP Ted McMeekin who spoke many words of praise.

Ladybug was able to make it through the dinner portion with a little help from Dr. Kozenko her metabolic geneticist. Who graciously volunteered to swing ladybug in her car seat as she began to fuss so we could finish our dinner. Dr. Kozenko had agreed to join us and put on a small presentation about ladybug and The McMaster Children’s Hospital.

As I mentioned before ladybug’s bedtime routine has been going quite well – even if she doesn’t fall asleep right away she is beyond happy to be in her crib by 7pm.  Alas our evenings out beyond 7pm with the wee one will now be a distant memory, but so worth it to finally have an hour or two in the evening to exhale.

All in all it was a fabulous night and I am so thankful for all the participants who truly wanted to be there and help raise money for McMaster Children’s Hospital. Not to mention the amazing outreach from local business’ for sponsoring holes and their generous donations which included and iPad. Sadly, we did not win this – it would have been for ladybug to use strictly as a communication and educational device of course. Congratulations goes out to our MPP Ted McMeekin who did however win it.

Most importantly I want to thank Ryan, Patrick, and Christopher, I can’t possibly express the impact this entire event has had on me. Because of the three of you our daughter and so many other children will be able to receive top-notch medical care in an up to date facility. You are all incredible and it has been an honour to be a part of the 3rd Swing Fore Dreams Charity Golf Tournament.  I can’t wait for the 4th!

Thank-You.

(More pictures coming soon!)

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Perfect To Me

7 Jul

During my 4th month of pregnancy, the uncertainty of what was going on with my ladybug was at its highest. I didn’t know if she would survive to term, and if she did – I didn’t know what, if anything would be wrong. The only thing we knew at this point for sure was that she was a girl, had a high Nuchal Translucency measurement, and short femurs. Everything aside from that was in the hands of the powers that be.

On one day in particular I remember returning to work from a weekly ultrasound appointment feeling a little down because the findings hadn’t improved. I was still at this point very quiet about what I shared with others, but felt compelled to let a co-worker know what was going on.

Every day I wake up and repeat the words that she told me. (One of my many mantras). “No matter what comes to be with this baby girl when she is born – she will always be perfect to you.”  Catherine, you couldn’t have been more right, I don’t see ladybug as being a 19 month old who looks like a 5 month old. I see her as my sweet little baby girl. Age is just a number and I know that she will reach the milestones she is meant to reach at her own pace. I don’t see ladybug as being developmentally or physically delayed – she is exactly where she should be.  I try not to stress about having to feed her through a tube in her tummy – maybe she will eat orally again maybe she wont. There is only one person who knows the answer and right now she is quite content with taking the odd ‘Mum Mum’ (rice rusks cookie) and otherwise being tube fed. To me my ladybug is perfect CDG and all. Albeit I may have the odd breakdown about her health issues now and then after all I am human but I wouldn’t want to change a single thing.  Sometimes you just need to a new perspective on things to remind you what is really important.

This poem was recently posted by a CDG family member and I don’t think I could sum up how I feel about having a daughter with special needs better.

My Perfect Child

As my children were born, I wanted them
to be perfect. When they were babies, I
wanted them to smile and be content
playing with their toys. I wanted them to
be happy and to laugh continually
in-stead of crying and being demanding. I
wanted them to see the beautiful side
of life.
As they grew older, I wanted them to
be giving instead of selfish. I wanted
them to skip the terrible twos. I wanted
them to stay innocent forever.
As they became teen-agers, I wanted
them to be obedient and not rebellious,
mannerly and not mouthy. I wanted them
to be full of love, gentle and
kind-hearted.
“Oh, God, give me a child like this” was
often my prayer. One day he did. Some
call him handicapped… I call him Perfect!!

Source/Author Unknown

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No Such Thing as a Silly Question

30 Jun

 If there is on thing that having a child with special needs has taught me, it’s that there is no such thing as a silly question. Some of the questions I have asked doctors may have seemed off the wall, however to our situation were very pertinent, and vice versa. I can’t even begin to count the number of times the docs have asked me questions that have left a puzzling look on my face that most likely read – you’ve got to be joking.  But…..that’s how they learn about rare disorders, that’s how I learned that a  telescoping intestine (Intussusception) is exactly as it sounds.  Most importantly that is how others learn about life with a child who has special needs, CDG, and how amazing our ladybug is.

Yesterday we had a wonderful little visit at McMaster Children’s Hospital to get some monthly blood work done and heparinze her port-o-cath. The heparin prevents the blood from clotting and must be done monthly if the port is not accessed. I say wonderful because it has become such a routine, it was like dropping by to see family. We even stopped for a few cuddles from our favourite nurses on 3C.

While we were in the waiting room a pregnant woman commented on how sweet ladybug was. Then proceeded to ask the most common question: “how old is she?”

*Deep breath* then wait for the typical confused look I get, a year and a half I replied. This time was different though. Instead of the usual 10 second stare as if they think I’m joking this woman asked why she is so little. I wanted to jump up and give her a hug! I began to give her a very brief outline of what ladybug has, she then proceeded to ask about her development and abilities thus far. Before I had a chance to answer she apologized if she was prying or if the questions seemed silly. I then had a flashback to my elementary school years and the teacher drilling into our little heads that there is no such thing as a silly question.

This woman had made my day, rather than staring at me looking confused and then shrugging it off she opted to ask more about why ladybug was so tiny for her age. I realize that not everyone is comfortable with talking about why their child is special, but for me and all of the mammas I know we are open books.

So this is my plea to everyone out there – ask away. I am very open to talking about everything we have gone through from my pregnancy losses, to ladybugs future, to what her favourite song is (right now it’s a toss up between Kesha -Tik Tok and If You’re Happy and You Know It).

Like Sir Francis Bacon once said “Knowledge is Power”.  The more people ask questions the more they can learn, not only about CDG but about tolerance and acceptance.

New Shoes

22 Jun

Yesterday we were able to pick up the adorable AFO’s. (Ankle Foot Orthotic) They were by far the tiniest that many had ever seen made at the site.

We decided on a butterfly pattern with a variety of different colours which enabled easy coordination to her wardrobe.

With ladybugs new AFO’s we had to get new shoes. Like many women I’ve always had a love affair with shoes. Since having ladybug my focus has transitioned from mary-janes and heels to medicine and doctors.

It was quite obvious that my little princess had the same love for shoe shopping as I once had. She was able to sprawl out on a large circular bench and be given copious amounts of attention.

At this point her feet alone are far too tiny to fit shoes larger than size 0/NB. With the AFO’s I knew that would not be the case. Yesterday, I spent my birthday picking up the AFO’s, and then bringing ladybug shoe shopping for the first time. *Tear* The moment I walked into Kiddie Kobbler I swear I heard angelic voices singing and had seen beams of golden light shining down on the store. Not only that – the sales girl had plenty of experience fitting shoes for children with AFO’s and knew exactly what would and wouldn’t work. It was probably a good thing that her feet even with the AFO’s were still quite small and the shoe selection was limited, otherwise I would have spent an even bigger small fortune. None of that mattered though, these AFO’s coupled with physio and hope were going to enable my daughter to view the world differently. She would be able to build muscle strength, stand, jump, and I truly feel in my heart that she will one day be able to walk.

Unlike most children ladybugs growth rate is very slow. Her itty bitty feet have slowly but surely grown very little in her 1 1/2 years,  so in one respect I am quite lucky that she will be able to get a lot of use out of her new shoes. Between that and wanting to do what ever I can to help her reach these goals, I didn’t mind splurging on 2 pairs while singing “New Shoes” by Paolo Nutini.

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Jumparoo for Joy

8 Jun

What an incredible whirlwind of fabulousness these past few weeks have been. The documentary for McMaster Children’s Hospital which feature my ladybug aired last weekend and was fantastic.  Now it’s back to our typical routine of doctors appointments and packing for the move. Which is in 10 days. (Freaking out just a bit, as packing isn’t even close to being done)

The most anticipated and fought for appointment was last Friday. Our little ladybug finally got fitted for her very first pair of AFO’s.  AFO stands for ankle-foot orthotic. It is a brace (usually plastic) worn on the lower leg and foot to support the ankle, hold the foot and ankle in the correct position, and correct foot-drop.

The process was actually quite easy. An orthotist put a cloth sleeve on the itty bitty legs and feet then she wrapped ladybugs leg from her knee to the tip of her toes in a fiberglass casting material. After some smoothing out the cast had set and was ready to come off.

The same was repeated on the opposite leg and then we were done!

We will head back on the 21st of June to pick them up.  I can’t wait to see them. Long gone are the days when prosthetics and orthotics look like they belong on a manikin. We were able to flip through a binder full of different patterns that ranged from camouflage (sadly no pink), fish, butterflies, hearts and many more. Keep an eye out to see which pattern we decided on and how absolutely adorable they look.

She has been trying with all her might to stand but just doesn’t have enough muscle strength to last for more than a second or two. Put that together with her love of bouncing/jumping especially in her Jumparoo and the AFO’s will be the first step in allowing her to take a first step.

With a pillow underneath for leverage my little ladybug has discovered that she can bounce herself in the jumparoo. I can only imagine what she will be able to do once she gets the AFO’s at the end of the month.

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The Miracle Weekend We’ve Been Waiting For

3 Jun

After the interviews, filming, photo shoots, and weeks of anticipation for “Where Dreams Take Flight” (one-hour documentary on CHCH TV which includes our ladybug), the Mac Kids Miracle Weekend is finally upon us. I had the immense pleasure of meeting another family that is being featured on the documentary, and we were joined by the team from Shooting Eye Productions, along with staff from Marketing & Communications and Corporate & Community Initiatives at the Hamilton Health Sciences Foundation for the family screening of “Where Dreams Take Flight”.

The documentary was absolutely amazing.  Being able to see the finished product exceeded every expectation I had. To say it brought tears to my eyes would be an understatement. I had tears in my eyes, down my cheek, and had a drenched stock pile of facial tissue in my hand. Being able to watch what other families have gone through, knowing that all though our journeys differ we can all relate on some level was very humbling. I felt such a strong connection to the family sitting behind us, there is really no way to describe it.

There are three stories that are featured on the “Where Dreams Take Flight” documentary, with our ladybug being smack dab in the middle.

I hope that everyone is able to take some time out of their crazy busy schedules to watch CHCH TV this weekend.

Mac Kids Presents: “Where Dreams Take Flight”
(one-hour documentary)

Friday, June 3 at 7 p.m.
Saturday, June 4 at 7 p.m.
Sunday, June 5 at 5 p.m.

If you don’t get a chance to watch this weekend you can always stop by the Mac Kids Website  and see what incredible changes are taking place to help heal our future. You can also make a donation for the Mac Kids Miracle Weekend here.

The impact of Miracle Weekend is felt every day throughout McMaster Children’s Hospital, as donations support the costs to upgrade and purchase new medical equipment and fund programs that improve the lives of children across this region.

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