Tag Archives: Krabbe

In honour of Lauren’s 3rd Birthday

26 Jan

Well the BIG day is upon us – Lauren’s Birthday Party and fundraiser benefiting the MAB Mackay foundation and our family is today January 26th!

To commemorate the big event, Lauren’s auntie Marlena put together a really fun video that I would like to share. Thank you Marlena! 🙂

Click here to open the video on a mobile device

I’m up late tonight finishing off some of the last-minute details and because I’m too excited to sleep. I haven’t felt this much nervous excitement about an event since my wedding day! But I have some awesome helpers that are sure to make the day a success.

We have been working so hard along with our wonderful party planner Rania of Rouge Event Design to throw a birthday party to be remembered. Rania has taken a dream that I had and turned it into something amazing and I can’t wait to see it all play out.

If you are available you should come check us out at the Dollard-Des-Ormeaux Civic Centre Banquet hall from 11am-4pm. There will be tons of fun activities for the kids as well as some amazing raffle prizes for the adults. I really hope that you will consider joining us!

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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

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Merry Christmas!

25 Dec

Merry Christmas!

Wishing you a Christmas full of warm memories and wonderful moments.

With Love,
Amanda, Stephen, Lauren and Buddy
xoxo

Lauren is back to business

25 Sep

So if you followed my last post you know that Lauren had some temperature regulation issues the other night (if issues is the right term for hypothermia) – I’m happy to report that the next day, she was doing much better, her temperature and spirits were both up and we’ve been enjoying some fun moments since.

I’d like to take a moment to get back to the day before Lauren’s cold spell, it was pretty eventful. Lauren started back to her Hydrotherapy group at the Mackay centre. She was so happy to be back in the warm pool and even got to meet one new friend and swim with another from her previous “class”.

Our pool sessions are always fun and interactive – Lauren had water poured on her hands and toes from a small yellow watering can, played with a yellow duck puppet and felt all sorts of fun textured toys under the water. She also took part in some games where I would slowly move her side to side in the water to “swim like a fish” or turn her in a circle to “move like a crab”. These sessions are awesome because Lauren is more than a child with a disability she is a CHILD, enjoying and playing in the pool.

Later that night Lauren, Stephen and I headed to our first ever municipal council meeting. Stephen and I had noticed that the playgrounds in Beaconsfield aren’t equipped with any adaptive play equipment. We know that Lauren and other children in our neighbourhood  could definitely benefit from the experience of “playing” with other children. It nice to have some equipment in our home, but Lauren would love to get to go out to the park!

After a few e-mail exchanges with one of the Beaconsfield councillors Rhonda Massed, we were encouraged to present our proposal to the council. That is just what we did!

We were a little nervous to go up, but Rhonda had been so encouraging. So as the meeting began Lauren and I sat hand in hand in a very crowded meeting room (yay to Beaconsfield for having such involved citizens) while Stephen presented our ideas to the council. He did a great job and we’re really hoping that it’s a project that the city is willing to take on. I would LOVE to see Lauren enjoying our parks next spring.

Many citizens and councillors came up to us afterward to offer encouraging words and feedback about our ideas! Imagine if Lauren could make an impact for other children who want to enjoy our parks but are currently unable to!

Yesterday Lauren’s temperature returned to normal, we enjoyed a walk with Grandma and Buddy outside and then took some nice pictures. I’m so happy to be blessed with these small but amazing moments!

Thank you to everyone for all of your warm and positive messages and prayers over the last couple of days and throughout the past few years. Lauren is so loved, and we are so touched.

Just a quick note before I finish this post! We are a little over the halfway point to our CLSC Lac St Louis fundraiser Goal, we could really use your encouragement as we train for our Half-Marathon on October 6th. Please consider donating, Canadian tax receipts are available and the funds go help our family as well as others going through similar situations in our neighbourhood.  Please check out this Link for more info!

Here are some pictures from the past week

Lauren is ready for the pool!

Lauren is ready for the pool!

Post pool and so relaxed!

Post pool and so relaxed!

A picture of Lauren with Rhonda Massad

A picture of Lauren with Rhonda Massad after the council meeting

Grandma and Buddy Loving on Lauren

Grandma and Buddy Loving on Lauren

My living angel

My living angel

Another plug for our fundraiser 🙂 click the picture below for more info!

a "Post Run" pic from an earlier run this summer

a “Post Run” pic from an earlier run this summer

A pre-post to a fun summer update

11 Aug

Let me begin by apologizing, I’ve left this blog quiet for too long…

This summer has been an amazing one, Lauren has been stable and we have been working on knocking some fun items off of Lauren’s bucket list. I will be posting a mega Bucket list revisited post this week, so if you’d like you can take a look at the original post: A Mother’s Bucket list for her child from last year in the meantime.

When communicating to others about Lauren’s disease and her journey I have always tried to take a positive approach. I have learned to stop asking why this has happened and just thank God that I can still hold my baby girl right now. Our family has been blessed by the gift of extra time.

I’ve often had people tell me that they are praying for a miracle for us, and I always thank them. I do however think that we have already been granted one. Lauren is still alive, and her disease has not affected her as harshly as it could have. Don’t get me wrong, it absolutely sucks, it’s hard and I HATE Krabbe disease, but it could be worse.

Originally we were told that children with Krabbe Disease have an average lifespan of 13 months.  I have to tell you though, I’ve never believed that could be the case for Lauren. I mean she only started showing symptoms in October at the age of nine months, and she was already ten months old when we were told that she was dying.

When we visited with a specialist in pittsburgh, Dr. Escolar, gave us a better idea of timelines and although she doesn’t like to give out times (since every child is different, and some surprise everyone) she said that three to four years would be a realistic expectation.

This news made the past two years a bit easier, we had hope and strength because we never really felt like Lauren’s time here was pressing on.

Since January I have been shaken. Updating this blog has become more difficult. We have lost so many of our Krabbe children this year. A reminder that there is no timeline, nothing can be planned and that we MUST live for the moment. I feel like I’ve been saving all of my energy for living in the moment but that I don’t have anything left for much else.

I have never felt like telling people that our daughter is dying and have tried in the past to express that our daughter is living. But lately, I’m worn … my strong composure is cracked and the words dying have escaped my lips more than I like to admit. Sometimes I just feel that it’s a reality that I live with everyday that is sometimes forgotten. I’ve not looked for pity on the subject but more an acknowledgement of the reality from others.  I guess in the end I’m looking for an emotional balance, a way to acknowledge the truth but to also to not waste the moments that we have left.

Lauren is two years and seven months old now. Our strong little miracle, she lives a very hard life with grace. Her disease has moved forward and she has fought it along the way. When she has a painful spasm she holds her face and waits it out, barely letting out cries. She has learned to recover from the frequent startles that come to her throughout the day, and even puts up with Buddy barking at the mailman. She is amazing.

I didn’t really share this earlier, because well… it depressed me. But I would like to share some of her clinic results. Lauren is part of a study that tracks her disease progression, In November we had an MRI done, at the time the amount of damage in her brain had become significant. I knew that something was starting up in October when Lauren began to have temperature issues – her body temperature would drop to 32.4 C (underarm temp) and would stay that low for hours. If you would kiss her, you would swear that she just came in from playing outside.

The MRI showed that Lauren was beginning to show demyelination of her brain stem. The brain stem controls important things like body temperature, and respiratory functions and other really important life-sustaining stuff (said like a true non-doctor). These results were hard to swallow. Lauren had been so “healthy” that we never thought that the disease could have progressed this far so soon.

But life has since adjusted, Steve and I no longer flinch at Lauren’s cold temperatures and her apnea has become almost normal to us. We’re used to seeing our child hold her breath for thirty seconds at a time (She’s even so good at it that her colour doesn’t change!)

In June, we received some good news – Lauren has been stable since her last MRI, the damage has slowed down along with the demyelination. Phew! and talk about a parents intuition Steve and I have both felt that this has been true since about March. Things have since been easier and more predictable.

The stability has offered us a wonderful gift – the right time to go and explore our world with Lauren as much as we can. We have taken full advantage, Lauren has done many wonderful things this summer. and I will leave you with a fun picture from our trip to cuba. (Yes! we took Lauren to the Ocean)

Thank you for reading this and for hanging in there through my semi ranting ramblings, I promise for a picture heavy and fun post coming up this week as we revisit our Lauren’s bucket list.

Lauren gets a kiss from a very lucky Dolphin

Lauren gets a kiss from a very lucky Dolphin

There are just no words

25 Mar

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 Patricks Day

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

St. Patricks Day Family picture

St. Patrick’s Day Family picture

Surprise! Naéva's parents joined in too :)

Surprise! Naéva’s parents joined in too 🙂

One of my most favourite pictures - Lauren smiling in the morning, this photo was taken only 4 days ago!

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

Soul Sisters

20 Jan

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This is a very special post,  it involves two of the most beautiful and wonderful girls one can ever meet – Naéva and Lauren.

Naéva is beautiful, she is sweet and delicate and shares many similarities with Lauren. The two girls are so stunning and angelic that you can feel their beauty deep in your heart.

These ladies were fast to be friends from the very start, they have the same great spirit, fashion sense, gorgeous big eyes framed with the most stunning lashes and the sweetest noses and lips, they are soul mates.

Sadly they both suffer from the same horrible disease, Krabbe leukodystrophy.

In early December my mom called to tell me that she had seen a mother post on Lauren’s Facebook page whose daughter was like Lauren and that they lived nearby! With the disease being as rare as it is, we couldn’t believe that we had found another living child so close by.

Soon after Naéva’s mother and myself were exchanging messages. As fate would have it a week later we would find ourselves crossing paths at the same hospital (a complete coincidence!).

Come January we just had to have the girls meet for a proper play date. We went to visit at Naéva’s home, to say that it was an amazing experience would be an understatement. The visit was so comfortable that it was like meeting with old friends, the visit brought joy and relief to have someone to talk to about what we have been through. It also brought sadness, Naéva like Lauren is so special and I have such a heavy heart that her family has to face the same destiny.

This past Saturday we were lucky enough to have the girls meet again for Lauren’s Birthday party! (more pictures of that to follow in another post!)

We are so fortunate to know Naéva and her family and look forward to sharing many more moments with our daughters together.

You can check out Naéva’s website here: http://www.naeva.ca/

Lauren watching over her new best friend

Lauren watching over her new best friend

Slumber Party! :) Two princesses take an afternoon nap together

Slumber Party! 🙂 Two princesses take an afternoon nap together

Because their toes are too cute not to share!

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Group Picture! Josée, Yannick and Naéva with Lauren, Stephen and Amanda