Still waiting for an update….

23 Nov

I’ve been putting off an update for days (now turned into weeks), hoping that I would have a final diagnosis to share, unfortunately we are still waiting.

While in the hospital our lives changed quickly – news of Lauren’s condition kept coming in and pilling up, burying us. Now that we’re home no more news has come, and although I know that whatever does come is bad, I feel like we can’t officially start this new chapter in our lives until we have a name for it. Until then, lauren keeps doing small things every now and then like smile bigger than usual or let out a laugh that has me question the diagnosis. When I really look at her though I know in my heart that they are right, she has regressed so much already.

Lauren is so beautiful, it’s very hard to come to terms with what is happening. Every day I wake up with one purpose, to make that little angel smile. Her perfect smile warms my heart and brings me to tears.

Most mornings I cry, it’s harder to deal with this when I’m run down. She screams through a good chunk of the night, so sleep is hard to come by. I have to remind myself though that for now even though her motor skills are regressing, her mental skills have not. What a frustrated little girl she must be, being unable to do things that she mastered at four months old, I can understand her irritability.

If you like to learn more about what Lauren is going through I have posted some links below that explain the two strains of Leukodystrophy that the doctors are leaning towards.

Thanking everyone for their prayers, nice messages and thoughts. It is your support (our family, friends and community) that help us get through our days – Your words, gifts and meals are greatly appreciated.

Krabbe Disease
http://ghr.nlm.nih.gov/condition/krabbe-disease
http://www.mayoclinic.com/health/krabbe-disease/DS00937

Alexander Disease
http://ghr.nlm.nih.gov/condition/alexander-disease

November 21st - Hanging out with glow worm and pillow pal

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5 Responses to “Still waiting for an update….”

  1. shannon November 24, 2011 at 12:32 PM #

    Xo

  2. ann morfitt November 24, 2011 at 9:47 PM #

    Dear Amanda,

    Your focus is in the right place, on the positive, encouraging Lauren to smile and getting rewarded by her perfect smile. This picture certainly made me smile, she’s so matter of fact and delightfully happy.
    You have a big heart, Amanda, you not only care lovingly for your precious daughter around the clock but you insure you let us all know how you and Lauren are doing. You can’t imagine how these updates, although I’m out of province, acknowledge my feelings of appreciating any and all miracles daily. Your entries also assure me that you are fully aware that you and your family are constantly in our prayers.

    Love Ann

  3. Pauline (Osena) Gauvin November 27, 2011 at 2:44 AM #

    Dear Amanda and Stephen,

    Lauren is so beautiful. Her smile warms my heart. Our thoughts and prayers are with you.

    – Pauline and Mathieu

  4. Tina Chasse December 2, 2011 at 10:59 AM #

    Steve and Amanda,

    I don’t go a day without thinking of you and your beautiful baby girl. During this Advent Season, I am dedicating all my masses to you. Stay strong. God bless and love always, Tina

  5. Selena December 2, 2011 at 9:16 PM #

    Stephen and Amanda,

    Thinking of you both and of your strong beautiful girl. Our prayers and thoughts are with you.

    xox

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