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.