September is Leukodystrophy Awareness Month

September is Leukodystrophy Awareness month. Leukodystrophy is a disease that affects the white matter in the brain, it helps to send signals across the brain and is essential to gross motor function.

Our daughter Lauren had Krabbe disease which is a form of Leukodystrophy, the average age of her disease is said to be 13 months. Lauren lived to be 4 years old and 3 months.

Born appearing healthy, Lauren reached healthy milestones until about 8 months of age. By 9 months it had become obvious that something was wrong when our princess couldn’t sit up well on her own anymore.

By 10 months her limbs had become stiff, her head heavy to support and the use of her left side almost gone.

By 11 Months (her first Christmas) she needed daily painkillers and had begun tube feeding by her nose. She still smiled and laughed but both were a little weaker each day.

At 12 Months Lauren had a gtube placed that would help tremendously with her feeds.

By 16 months Lauren’s vision had become poor, but would come and go for the next few months.

I still remember the overwhelming feelings, the helplessness of watching my child lose what felt like everything at the time.

Officially diagnosed with Krabbe at 11 months of age, I watched her deteriorate significantly within the next 5 months.

Once we were able to shake off a little bit of the fog and hopelessness of our situation, Stephen and I took action in making Lauren’s life as joyful as possible. Though her abilities limited her, she still experienced the world and we wanted to make our time with her count.

We lost Lauren on April 13 2015

Did you know that all of the above might have been avoidable if newborn screening had been available to us. Through newborn screening, Lauren would have been a good candidate for a stem cell transplant that could have stopped the disease in its tracks before much of the damage had been done. If only…

#WhiteMatterMatters

Check out Judson’s Legacy’s website to learn more about the #WhiteMatterMatters campaign

http://judsonslegacy.org/latest-news/white-matter-matters-campaign

There are just no words

Sometimes there are just no words to describe how I am feeling. All of my emotions are jumbled – I feel immense exhaustion, fear, and sadness. I continue my focus on the good that we have, because no matter how this ugly disease is and how it affects us I don’t know how I could live any other way…without my little girl.

A lot has happened since my last post, two more beautiful girls have been lost to Krabbe, Pheobe and Naéva. We were close to one of these little angels and often referred to her as Lauren’s best friend and soul sister. Naéva left this earth on February 23rd 2013 and is now watching us from above. She is free from the agonizing pain of the illness that plagues our baby girl, still she is missed so much.

I can’t even try to find words to describe how this precious girl’s passing has affected me. Although she suffered from the same disease as Lauren her passing was so sudden, too sudden! She became sick and left us within less than a week. Another reminder that time is too short and so precious.

Since Lauren’s diagnosis I can’t remember having felt any form of real excitement – everything always seemed fake. I would smile and laugh at jokes but it was never fully sincere. Meeting Naéva was like allowing rays of sunshine in, our daughter had a best friend. We made wonderful plans for the girls and found peace and love in every moment that the girls spent together. In a way losing Naéva felt like I had lost a piece of myself, my little Lauren had lost a sister.

Soon after Naéva’s passing Lauren came down with her first cold, well actually it was the Parainfluenza virus. We had to use a suction machine to help her through it as she couldn’t handle all the yuck that comes along with a virus on her own. For days Lauren would awake with fevers, she was very weak and wasn’t responding in the same manner that she normally did. One day I watched her lying on her bath chair, her eyes barely open and her body limp, she reminded me of a rag doll. Her perfect little body looked so weak…my heart sunk. Until this moment I don’t think I realized just how strong my baby girl actually was, because seeing her this way posed such a stark difference.

As her virus continued I could feel fear creeping in – I kept trying to brush it away as a small voice in the back of my mind kept asking “Could we be near the end too, are we ready for this?”. This little voice was my enemy, it was cruel and it made me face the tragedy that is waiting for us at the end of this disease. I wouldn’t listen, Lauren was still strong and I continued to help her fight this cold, no more negative thoughts. Steve and I lived on adrenaline for two weeks, and finally the storm passed and it passed as easily as it could. The virus ran its course without ever becoming critical, Lauren is now free from infection, we were blessed.

For the first few days following her illness, we were able to breathe easy. We were even awarded with some cute Lauren smiles, a miracle that she can still express happiness!

For the past four days, Lauren has begun crying a lot more. She is uncomfortable and stiff, her usual medication doesn’t seem to be working.

Tonight I posted this as my status on Facebook

Feeling worn and tired, and so sorry for my little one. Lauren has been crying almost all day and I hate not knowing how to console her. This disease wears on you in the cruelest of ways, once one hurdle is passed another arrives before you. We’re not sure if she teething or just irritable, and worst of all she can’t tell us. I am thankful for having her in my life, I pray that they find a way to kill this ugly disease.

I’m not sure why but re-reading the post made me feel worse. I feel terrible that I’m too tired stay upbeat, horrible that I don’t feel strong. I want a break but at the same time I don’t want to waste a moment apart from Lauren. I just want to hold her in peace, to hug her tight, to be able to comfort her. I want to be the warmth that makes her feel better. When everything I try fails, when holding her makes her cry, I feel like a failure.

I know that I shouldn’t feel this way and I am able to rationalize why – still I can’t help it.

I’m so sorry to end this post on such a low note, but to make up for it I will share some recent and cute pictures of our little girl.

Did you know that we offer daily updates and pictures of Lauren on Facebook? You can see her page by clicking here: https://www.facebook.com/Lifewithlol

Lauren was the Irish Queen in our house on St Patrick’s Day

St. Patrick’s Day Family picture

Surprise! Naéva’s parents joined in too 🙂

One of my most favourite pictures – Lauren smiling at mommy and daddy in the morning, this photo was taken only 4 days ago!

A Mother’s Bucket list for her child

Its been a really long stretch since my last update, I’m sorry for that.

The past month has been mentally difficult and although I’ve tried to keep a cheery disposition throughout the past few weeks I have been struggling internally as the sadness creeps in. October 28th marked the anniversary of the worst day in our lives – it was a year ago that we had first taken Lauren to the hospital.  A mere few hours after arrival we were hit with painful news that would alter our lives in a way we could have never imagined in our worst nightmares.  We wouldn’t have a definitive diagnosis until months later but we did find out that Lauren’s symptoms were most likely caused by a neurodegenerative disease for which there was no cure. I can still remember every detail of the room that we sat in when our Neurologist first delivered the news. We asked so many questions, we were grasping at straws, trying to hold on to any shred of hope – but it seemed that every answer delivered a more painful blow than the one before.

When I try to remember back to the first couple of months that followed our return home from the hospital I have trouble. It was like I was living under water, sound has been muted from my memories.

Sometime just before Lauren’s 1st birthday I shook the sadness to the side and put my best effort into living life for Lauren. Steve and I have focused the past year on making as many memories as we can and trying to ensure that Lauren is given a multitude of wonderful experiences.

And finally I get to the title of this entry…My bucket list for Lauren. I think that as parents we all have a list of things that we want to do for/with our children, whether it be as simple as making them a birthday cake. I have a list of things that I have wanted to do since before Lauren was even in my womb and a few others that I added along the way. As the time passes, the urgency to refer and add to the list grows.

Lauren’s progression through the disease has not been as fast as we were first told, still so much of her abilities have been lost. When first diagnosed Lauren laughed, smiled, waved, sat on her own and had begun speaking (nothing fancy, Hi’s, Bye’s and of course Dadda, she called me nyanna, I think she was aiming for Amanda). Today Lauren cannot smile, her laugh is inaudible, her movements most often come from spasms and her vision is extremely weak. That being said Lauren still understands and is cognitively aware of what is going on around her, she loves music and having stories read to her. She even gets bored and is not shy to let me know – mommy is no longer allowed to sing Itsy Bitsy Spider, but Rudolph the Red nosed Reindeer is appreciated.

So far this is the list of things that I have wanted to do for Lauren and have accomplished (there are probably more but it’s past 2am so I’m likely to miss a bunch!)

Have Lauren meet Santa – Last year we got Lauren’s picture with Santa and I am thrilled that we’ll have another shot at it this year (last years Santa seemed grumpy in the picture – I’ll have to scope out a few locations before picking a final Santa this time!)

Bake and Decorate her Birthday Cake – 🙂 Check that one off, I had taken a cake decorating class before Lauren was born for this sole purpose. I almost didn’t do it because I was tired and run down at this time last year but am thrilled that I did!

Take Lauren Sledding – So it wasn’t down a hill! We still had a great time going around the block

Take Lauren to the Biodome – Nonna made this one happen – Lauren got to see all kinds of animals but the Penguins were by far her favourite.

Play in the leaves – We missed out on this one last year while we were in the hospital, we did not let the chance slip away again this year!

Sew her first Halloween costume – Another one that I almost backed out of! Those Old Navy costumes were more and more tempting the closer we got to Halloween but in the end I sewed Lauren’s costume because I knew that no matter what I told myself I would regret missing the chance to do that for her.

Go on her first date – I have to thank Natasha and Mayte for this one (Both Krabbe moms like me). Thanks to our digital age Lauren attended her friend Gabrielle’s online Halloween party with her super cute date Kenan.

Make a Memory Jar – This was a pinterest find that I posted about before, it helps to capture the less monumental but yet extremely special moments that could go forgotten if not noted down.

Some things that I would like to do for Lauren but haven’t yet had the chance.

I want to put Lauren’s feet in the Ocean – This is one that I am upset I missed out on this past summer. I so badly want for Lauren to experience the feeling of her little toes in the sand while the waves lick at her feet. I want to show her real Sea shells and I want her to feel the ocean air on her skin and through her hair.

This winter I would love to take Lauren to Santa’s Village. I’m not talking about the lame mall display that they setup for a money-making photo shoot with Santa but a whole Village made to do so 🙂 I hear that there is one up North near Montreal that opens on December 1st, Lauren and I may be among the first in line!

Lauren will help decorate the Tree this year as I will be making a salt dough ornament with her footprint, or fist print (I can’t get her hands open)

Finger paint – This seems easy enough but I haven’t done it with Lauren yet, it is on the list and I will be sure to post up her masterpiece!

Take Lauren to a movie – a risky one if she is in a bad mood. I figure we can catch a children’s movie during the week when most kids are at school (with their germs!)

Bring Lauren to a concert – Anyone know if the Backyardigans are coming to town.

Take Lauren to a zoo – Nonna took us to the Biodome in the summer which was awesome, but I think the next step will be a full Zoo!

Attend a sleepover – Any takers? 🙂

Go to Bishops – Both daddy and mommy are Bishop’s University Alumni, we would love to take her on a day trip to Bishop’s one day.

That’s what I can think of now, I’m sure that tomorrow I will come up with at least five more things!

Do you have any ideas of things that we could add to the list that Lauren might enjoy! Please leave us a comment, we would love to hear some of your ideas.

Each item on the list is a potential new memory, a special moment in time to remember with our baby girl.

xox

Lauren’s first encounter with Santa – Christmas 2011

Lauren’s First Birthday Cake!

What’s a birthday without Cupcakes 🙂

Lauren loves when daddy takes her sledding

Lauren hanging with a Penguin at the Biodome

A Sunny fall day with Lauren in the leaves

Lauren on her date with Kenan 🙂

A Busy Month!

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.