Archive | April, 2012

A Busy Month!

28 Apr

So it’s getting on to be another long stretch since the last update, so I would like to start by apologizing for that! We have just been so busy these past weeks that it has been very difficult to find the time to focus on an update.

Let me try to catch you up!

Easter weekend came with much excitement, Lauren’s Auntie Marlena came to visit from NYC and Nonna came over from Belleville! Lauren enjoyed their company but had been experiencing a lot if pain, so much so that we ended up having to give her a low dose of morphine on Easter Sunday so that she could rest comfortably. By the time my family stopped by for desert that evening (cousins Julia, James, Grandma, Grandpa, Auntie Linda and Uncle Roger) she had fallen asleep. She was so peaceful for the first time in days, I think that she still knew that everyone was here to visit her, and could hear all the noise around her. She was very happy.

Bunnies! Julia and James join Lauren for a cute Easter pic

Family pic with my in-laws 🙂

Oh and a quick mention, this Easter – April 8th marked Lauren’s 15 month Birthday! Happy Birthday my little Princess!

Coming Soon! On the next post I will try to include a link to a new YouTube video of Lauren and her Nonna’s Second concert of the year. This time Lauren handled a drum! 🙂

Later that week we packed up and went to Pittsburgh to visit Lauren’s study doctor. We initially feared travelling with Lauren since she has hated being handled lately, but I’m happy to say that with a small dose of morphine she was quite comfortable and made for a very good traveller. Security was also amazing, once they heard about Lauren’s condition they didn’t make us take her out of her car seat and stroller, they just checked her out as is, leaving her a happy little lady. Much better than the blood curdling screams that would have unleashed otherwise.

We were in Pittsburgh for three days, the first day in clinic was a really busy one. We started our morning with a 6:45am MRI, followed by some time in clinic with our doctor who was able to check Lauren out and assess her. We then we went for two more tests at the children’s hospital and concluded our day with an interview with CTV Edmonton via Skype. The interview was to help spread awareness in Edmonton for a family who was hoping to come to Pittsburgh with their children for treatment, it’s very expensive and they are trying to raise money to afford the procedure.

Click Here to check out the Interview! (Note that the video is flash-based and may not work on iPads or iPods)

6:45 am, the perfect time of day for an MRI - surprisingly we look awake!

On the second day that we were there we had the opportunity to meet with two families that had also been affected by Krabbe disease.

At the children’s hospital (which was the nicest hospital I’ve ever seen or dreamed of seeing) we met up with the Smith’s who’s gorgeous 7 month old daughter Lily had just undergone a cord blood transplant. The transplant will give her more time and will slow/stop the progression of the disease. Unfortunately the transplant can’t give back the damage that  has already been done by the disease but Lily is a strong little girl, full of life. Having the transplant done although lifesaving can be a very difficult road to recovery – Chemotherapy is done prior, and the transplant is followed by an 8 month recovery (in hospital). You can check out Lily’s Facebook page here http://www.facebook.com/LittleLilyGrace  We pray every day for this cutie to have as comfortable a recovery as possible.

Waiting room window overlooking the hospital lobby. (btw we waiting a max of ten minutes for each appointment!)

That evening we met up with the Changle’s a family who had lost their boy Dylan. Dylan had an early infantile form of the disease and passed at eight months old, four very short months after diagnosis. We enjoyed a very nice dinner overlooking the city of Pittsburgh. The conversation though difficult at times was warm. They shared stories about Dylan and we shared our experiences with Lauren, by the end of the night Stephen and I left feeling like we had shared dinner with our family, rather than a family that we had just met.

Although we are so sad for their loss, we found comfort in their strength and ability to live positively after losing a child. I often wonder how we will go on when Lauren leaves us, we have poured so much of ourselves into our little one that I worry at times that there wont be much left when she’s gone. This family continues by honouring Dylan through “Dylan’s Quest for the Cure”, a foundation that works with the United Leukodystrophy Foundation to raise money to support research into a cure for Krabbe Disease.

Joe Sr., Amanda, Lauren, Stephen and Joyce (Dylan's Grandparents) We had also met with Joe, Dylan's Father but missed our photo op before he left 🙂

Upon arriving home from Pittsburgh we had our family over to visit with Lauren and to Celebrate my Big Brother’s Birthday. Of course I have to post a picture here of him with his baby niece!

Uncle Dave with Baby Lauren, she partied so hard that she had to take a nap!

Phew! Are you getting tired of reading this long update yet? I’ve only recapped until the 15th! Continuing on…

Since arriving home so much has happened, but I will try to keep it to the most exciting stuff.

Lauren hanging out in the kitchen enjoying her new Kimba seat, check out the smile!

#1 – Lauren’s Kimba Stroller and home base have arrived!

Lauren seems to love her new seat and can spend hours watching us from it. Now we have the freedom to move her from room to room comfortable and best of all Lauren is getting to experience different sensations, smells and views from her new chair. She has joined us at the dinner table, and has watched daddy cook up a storm in the kitchen.

#2 Lauren finished up her swim program and got a very nice certificate. (She starts a new session two weeks from now)

#3 Lauren still loves massage! Mommy has even started to take Baby massage classes with her.

#4 Lauren continues to do really well with her Osteopathy Treatments (recommended to anyone! I’m constantly amazed by the results)

#5 Lauren really loves her bi-weekly music therapy sessions (Also amazing!)

#6 Almost forgot! Lauren got her new hand splints. As a child suffering of Krabbe disease, Lauren has her fists clenched almost all day, this can get really uncomfortable. The hand splints will help relieve her hand a little.

I’ll post some pictures below of Lauren enjoying her favourite therapy/activities. I wanted to end the blog with an update on Lauren’s health.

Believe me when I say that Lauren is still full of life! She has been surprising us with little Laughs and smiles since arriving home. That being said, the disease has continued its course. Our Doctor in Pittsburgh had mentioned to us in the beginning of December that Lauren’s Vision would most likely go within the following six months. Eerily enough she was right on with her prediction, Lauren struggles to see. Lauren can only track at a 25 degree angle, can focus on lights and shiny things but has trouble with solid colours. Lauren also experiences a delay in processing what she is seeing, so faster moving objects may be missed. Stephen and I have bought some toys that light up and are easy for Lauren to follow. We have also learned that Lauren sees best when an object is accompanied by sound. Great news since a lot of baby toys come with light and music!

Lauren still hates being moved from one place to the next, but she has allowed Steve and I (and even Grandma!) to hold her. It’s a wonderful feeling. The only thing is that it’s uncomfortable for her if you have to get up and move her later on, I’ve quickly learned to take bathroom breaks and reserve a couple of hours for holding her and nothing else.

Her hearing is still strong, her eyes always widen when she hears new noises (or mommy coming in for a kiss)

She has lost almost all voluntary movement. She can only move her arms slightly, allowing her to play with her sensor toy from the rehab centre.

The good news is that she is still a smart little lady and seems to understand when we speak with her and even enjoys little games that mommy plays with her. As an example she loves when I tell her that I’m going to give her a kiss, then make kissie noises as I approach her slowly. A lot of the time when I finally get close up she will let out a small laugh.

Lauren's new hand splints - doesn't she look like she's getting a manicure?

Music Therapy!

Lauren all ready for a swim

So relaxed after a massage from Lucia!

Lauren in her Kimba, Notice the beautiful Photo's by Jenn Munro in the background.

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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!