Archive | August, 2011

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.

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.