We have been so incredibly blessed over the past few weeks to have been surrounded by wonderful friends and family. A huge thank you to all of you who have prayed, emailed, called, messaged, sent notes, and brought meals. It is such an encouragement to know that we aren't alone in this journey. Please forgive us if we're not able to respond to your message, but be assured that we are grateful for the contact and for knowing that you care. There are just some days (actually, most) that we're doing our best to keep up with vital communication with doctors offices, insurance companies, drug reps, etc. Thanks for understanding!
In other GREAT news, the past three days we've seen some smiles from our girl. Each day, there has been a short window in the afternoon where she has brightened up and been herself. For the past few months, a favorite part of my day has been our little bedtime routine with Grace. I nurse her in her room, say a few sweet things to her, put her in her bed, and then give her a kiss on her cheek. Before she was on the medication, she would anticipate the kiss and start smiling as I bent down over her crib. The smile vanished once the meds started, but the last two nights, she started doing it again. I love it. It's the little things that keep you going, right?
A huge prayer need of ours right now is nighttime sleep. Last night was our most difficult night so far, as we were up with Grace way more than we slept. There was much weeping and gnashing of teeth (not really clear on what gnashing of teeth means, but I'm pretty sure it happened). Really, all three of us are shot. After only being up 30 minutes this morning, Grace started falling asleep to her Baby Einstein video. It was either really boring, or she was really tired.
Tonight marks the end of Phase 1 (see the post "28.5%" if you don't know what this means). Tomorrow we start only having to give her one shot a day!
-Michelle
Thanks for the update, Chelle. I love y'alls perspective on this - you're my heroes. So wishing I could drop off a meal for you, give you a big hug and tell you we should get coffee once everything settles down. *sigh* This will have to do, I suppose.
ReplyDeleteI'm going to go with "boring" AND "really tired." I mean have you ever really paid attention to those videos? Seriously. Snooze fest. We watch Sesame Street -- because I like it more.
ReplyDeleteSend me your address, love!
thanks for continuing to be real and share your struggle. i will pray for sweet sleep tonight - even if it is 30 minutes at a time.
ReplyDelete