Three thermometers

24 Sep

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.




16 Responses to “Three thermometers”

  1. mir September 24, 2013 at 2:54 AM #

    I hope she gets comfortable and toasty warm from your kisses soon.. ❤ I can understand the frustration to buying so many items without any of them working ugh!!!
    kisses to Lauren, my sweet sweet girl who I have quickly grown to love from reading your blog / talking on facebook!

    • lifewithlol September 24, 2013 at 10:31 AM #

      Thanks Mir, in the end all of the thermometers were working, Lauren had just been too cold to register a reading!

  2. Kristen D September 24, 2013 at 4:37 AM #

    Sending warm thoughts and prayers your way. Lauren is getting to have such a mature look… She’s really beautiful! Thanks for sharing her progress (and non-progress).

    I’ll keep praying for her to feel better and for strength for Mommy & Daddy.

  3. hillary September 24, 2013 at 6:09 AM #

    Prayers and love always! We hope your night was uneventful and warm. *hugs*

  4. Terri September 24, 2013 at 6:27 AM #

    Sending as much warmth, strength, love and prayers as I can! Have a Lauren, mommy, daddy and Buddy snuggle. I bet all the love from everyone will warm Lauren up in no time 🙂 We love you, Lauren!!!

  5. Jackie September 24, 2013 at 6:58 AM #

    Sending warm hugs to you Lauren! Even your tiny cry is precious. We will say an extra prayer for you today

  6. Duanelle Hook September 24, 2013 at 7:39 AM #

    I’m praying for Lauren every day. I’m so sorry she is cold again. Praying she warms up as you hold her next to your body. Your love and warmth will fill her with from the inside out. I know how she feels. I’m always cold. And my Grandson that had Krabbe loved to smuggle against me inside my sweaters. God bless you all.

  7. Noreen Schiavi September 24, 2013 at 8:03 AM #

    As I sit here reading the latest on Lauren, tears stream down my face. I think of Lauren every day when I open my wallet and the first thing I see is her beautiful face. No one deserves to suffer this horrible illness but Lauren is so blessed to have you and Stephen as parents. You both are my (and Lauren’s I am sure) heroes. God bless the 3 of you.

  8. Gemma September 24, 2013 at 9:07 AM #

    Common little Lauren! Let all of our warm wishes, kisses and thoughts warm up your little body! We love you!!!! xxxxxxx

  9. Julie September 24, 2013 at 9:48 AM #

    Dear God,

    Please warm this sweet child’s body, let Your warmth radiate from her head down toes, bringing her comfort, relaxing her muscles, keeping her comfortable. She is already going through so much, please bless her with an easier than expected journey through this disease, and bless her parents and family and all those who love and care for her. Amen.

  10. Kim F September 24, 2013 at 11:52 AM #

    Your family is always in my thoughts. May everyone’s well wishes, thoughts and prayers wrap Lauren in a blanket of warmth. I just love the pics you have shared of Lauren and Buddy too, such a sweet relationship.

  11. Kari Schneider September 24, 2013 at 1:46 PM #

    Dear Amanda and Stephen, Although I have never met you or your beautiful daughter Lauren, I feel that I have come to know all of you through my sister, Kathy and my mom, Lea. I cannot tell you how much your daughter has touched our hearts. For the past 18 months, Lauren has been in our prayers every evening during grace. She is a strong little being and an inspiration. You are an amazing couple and you have an amazing daughter. God Bless.

  12. Sabrina U September 24, 2013 at 3:42 PM #

    Praying for our little princess Lauren each and every single day. May her warm heart, spirit and her loving parents arms and love keep her warm. God bless.

  13. Carol Hume September 24, 2013 at 9:31 PM #

    My heart goes out to you and your precious girl. I’m definitely praying for her.
    with love,

    • lifewithlol October 5, 2013 at 11:08 PM #

      Thank you Carol, we appreciate your continued support

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