Tag Archives: Krabbe lifewithlol

Happy 3rd Birthday to our Princess

8 Jan

I am ecstatic, Lauren is three years old today! We feel so fortunate to have been given the gift of time with our daughter, two years ago I didn’t know that we would get to share so many birthday’s with our cutie pie.

Thank you for following our daughter’s journey and for the love and support that you have given our family over the past few years through your thoughts, prayers and help.

I’m excited to announce that we will be throwing Lauren a BIG birthday party/fundraiser on January 26th (mark your calendars!). More details are to come, but I can tell you that it will be a fun family event in the West Island of Montreal. Lauren will be there, along with tons of fun activities for kids! We will be posting details very soon and would love to have you join us!

I’ll leave you with a picture of our princess in her birthday dress



Finding Moments of Joy

2 Apr

I wake up every morning with a heart that is full of pain and sadness, but as I drag myself out of bed I make the conscious decision to open my heart and to accept the small but significant moments of warmth and light that are presented as they come.

It has been about three weeks since my last update and I’m happy to report that we have several moments of Joy to share.

Let’s begin with Lauren’s second and very momentous St. Patricks Day. Last St. Patricks day came and went without much thought (Sorry mom!) but this year with Lauren encouraging us to live in the moment, we made sure that did by hosting a quick family photo.

Uncle Roger, Grandma, Cousin James, Lauren, Mommy, Cousin Julia, Auntie Linda and Daddy

Later that week we took Lauren for her first massage. After some resistance she finally relaxed, and I mean RELAXED!   I think that it lifted all of our spirits to see her fall so sound asleep.

Lauren enjoying a very Relaxing Massage at the Mediclub

Friday of that week rolled around and with it came a very fun day – Lauren’s first day in the pool program at the Rehab centre. This was a big moment of joy for me, we were so excited that us girls went and bought almost matching bathing suits  the night before. Lauren’s bathing suit bottom ended up being a little big but she still wanted me to take her picture in the complete outfit.

Lauren in her fancy new swimsuit - Which way to the pool?

The pool water was warm and relaxing. Lauren got a lot of attention from her physiotherapist and loved floating in the warm water. She was especially excited about getting to take part in songs and activities with other pool friends! Halfway through the class, Lauren was so relaxed that she fell asleep!

Loving the water!

In the week that followed, Lauren got to go and meet with an Occupational Therapist. She tried out a very fancy bath seat and got to use some really neat sensory toys. In the picture below she is trying out a Boing illuminated ball, one that she loved so much, Mommy ordered it right away when she got home :). We were also able to borrow a sensor switch that hooks up to a CD player and plays music when Lauren is able to move her arm slightly. I have trouble putting down in words how cool this really is. Lauren has lost a lot of mobility since her disease has taken over, so much so that I would normally attribute a lot of her movements to spasms. With this switch it has become obvious that she is able to make small purposeful moves. Our little smart angel is so strong!

Lauren with her Occupational Therapist mesmerized by a lit up Boing Ball, while trying out a bath seat

Video of Lauren testing out the Musical Sensor Switch


Some other things that Lauren got to enjoy recently include a second trip to the Osteopath, and some wonderful at home music therapy! The music therapy was really fun for all of us and Lauren really got to enjoy it, which was extra nice since she had been incredibly cranky minutes before it had started. Amazing what some good twinkle twinkle little star, and itsy bitsy spider can do for a cutie like Lauren.

Another thing that brings us joy – our Lavender Bracelet campaign! Thank you to everyone who has and continues to support Lauren in her Journey with Krabbe disease. Knowing that people are wearing the lavender bracelets and thinking about our angel warms our hearts so much. Your gifts go to help us care for Lauren’s quality of life in many ways! Thank you for including our daughter in your hearts.

Thank you for continuing to read our blog updates, it is your following that encourages me to reflect on the positive moments in our life. It is very difficult to watch our daughter suffer at the hand of this disease, but it is so important to remember that good still exists in our lives, we just have to look a little harder sometimes.

Lauren's Beautiful Bella Letters, check out bellaletters.com - Thank you Kate!