Dear family and friends,
There is not much to report as far as medical news goes; the primary purpose of this email is to pass along the attached photo of now-three-year-old Luke holding eight-and-a-half-month-old Eliza ("his favorite sister," he told me yesterday, as he composed a song for her on his keyboard about Tyrannosaurus Rex). He can elicit a smile from Eliza with a kiss on the head almost any time he tries.
As for what's new with Eliza, there's not much. As of this coming Tuesday, she will be completely weaned from all anticonvulsants without any sign of increasing discomfort on her part. This means that as of Tuesday, Eliza will only be on four medications: two for reflux, one for breathing, and one for sedation. What a change from the dozen she was on when she came home six months ago! It feels like a small victory to have finally reached this point.
We'd particularly appreciate your prayers for us as we struggle with what often feels like treading water: we know we're not making any real progress in the sense of Eliza "getting better," and we also daily must face the reality that we have no idea how much longer she
will be with us. As is often the case in so many circumstances, the waiting is the hardest part.
Scripture reminds us to trust that God's timing is perfect ("Be still before the Lord and wait patiently for him" Ps 37:7), and we appreciate your prayers as we struggle with this each day, even as we treasure the moments we have with Eliza.
Love,
us
