Lauren is back to business

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!

Post pool and so relaxed!

A picture of Lauren with Rhonda Massad after the council meeting

Grandma and Buddy Loving on Lauren

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

Three thermometers

Lauren owns three digital thermometers…we once had four but I threw one out.

Why would we need so many?

Well earlier this year our first digital thermometer started acting wacky. It wasn’t the most high-end digital but it also wasn’t the cheapest. It was kind of sucky in that it took about a minute (which always felt like 20) to finally settle on a final reading. One day my thermometer seemed to have become increasingly “sucky” when it just couldn’t read Lauren’s temperature and instead annoyingly read a capital letter L in place of a number. Later that same day when I tried again it read 32 degrees Celsius by an underarm reading – a ridiculous temperature, one that would mean she is hypothermic. I had a enough and tossed my thermometer in the trash and headed to the pharmacy to buy a higher end version.

While Lauren was at home with one of our amazing caregivers, I headed to Pharmaprix to scope out a more expensive digital thermometer. After comparing a few and shelling out a little over 30 dollars, I came home armed with a fancy quick reading digital thermometer that even had fun colour displays so you couldn’t mistake if your child had a fever.

Upon arriving home I tried out my new masterpiece of digital thermometry and do you know what it read… L, a capital L!!! I was enraged, I couldn’t believe that I had bought a dud. I left the house a second time that day and headed to the Dollarama to buy a two dollar digital just to see what it would say, I didn’t want to spend another 30 dollars – I couldn’t understand how I managed to acquire two malfunctioning thermometers, I mean that’s a bit crazy isn’t it!?

The cheap thermometers (I bought two this time) that I arrived back home with gave readings (probably because Lauren had warmed up) it was 32.2 degress celsius by underarm and 33.4 rectal. She was cold, and I mean really cold.

I remember the panic at the time, I felt helpless and so completely frustrated. I had heard that temperature regulation could be a problem for our kids (kids with Krabbe disease) but I hadn’t seen anything like it before. My daughter was so cold that to kiss her cheek would leave your lips chilled, it reminded me of kissing a child’s face who had been playing outdoors on a cold day. I spoke to our doctors and nurses, and it seemed that there wasn’t much I could do but keep her bundled and wait for her temperature to rise.

The worst part about it, the absolute suckiest part – Lauren gets multiple spasms that are very uncomfortable when she is cold.

These temperature drops seem to come and go, sometimes lasting only a few hours, other times half a day. We are as used to them now as we can be, but we will never be at ease with it.

Tonight she is cold… 32.2 degrees and I hate it. Along with her temperature drop came the spasms. Her little arms flail up and shake, she has small seizures and pained tiny screams pass her sweet cold lips.

We had such a wonderful day together that it was going to be the original topic of my blog. I love sharing the fun times that we spend with Lauren, like how she went swimming this afternoon and loved it. I also wanted to share how her first city council meeting went (she’s a very involved citizen you know!).

Instead I decided to let you in on just one of the consequences that this terrible, awful, horrible, disgusting disease has on my darling princess Lauren. As I type this she is lying next to me bundled up in layers of blankets with a warm buddy sheep and a giraffe hot water bottle, she is medicated with Tylenol and Ativan which have finally kicked in since I can hear her snoring softly. Our dog Buddy is affectionately curled up by her feet, protecting his big sister the best way he can.

If you have a moment to think or pray about our daughter, I would really appreciate it. Please pray for this to pass quickly so that we can greet tomorrow’s new adventures openly. We are so blessed to have Lauren in our lives. She is a strong little fighter and she has been doing so well considering everything she has to go through.

I’m going to leave you with a sweet picture of Lauren and her dog buddy taken just yesterday. I already shared these through our Facebook page but wanted to make sure that everyone had a chance to see them.

Tomorrow I will update you on Lauren and how her night went and hopefully spend more time on the “fun” moments.

Lauren hits the beach!

Today I have a very exciting post to share – Stephen made a video of Lauren’s vacation! Check out the video below to have a first hand glance at Lauren’s cinematic debut in “Beached Lauren” 🙂

Just to re-cap, going to the Ocean was a huge bullet point on our bucket list for Lauren. The trip that we took to Santa Clara Cuba offered so much more.

In July 2013 Lauren got to experience

– The Ocean
– Feet in the sand
– Kisses from Dolphins
– Catamaran rides
– Braids in her hair

and amazing new friends.

Click here to open the video on a mobile device

Quick reminder – Stephen and I will be running a marathon on October 6th for a cause that is very close to our hearts – The CLSC Lac St louis and Pierrefonds foundation (donations going to Palliative care) please consider supporting by visiting this link

A run dedicated to the CLSC Lac St Louis Foundation