Sober Sunday

Gracie awoke bright and early again...5:30 a.m. She awoke in a good mood, but was pretty sober most of the day. We did have smiles, but we had to work pretty hard for them. I was told to watch for possible depression as we decrease the prednisolone and I wonder if perhaps there was a little of that going on today. She was so tired too. She took a half hour morning nap, less than an hour afternoon nap and then I coaxed her into taking a second afternoon nap that lasted about 45 minutes.

When I was home with Gracie in the days where she had to be held constantly, I would often put on her Wee Sing CD and we would sing and bounce to it. One of our favorites was "The Ants Go Marching". I haven't turned it on since that time. Today I was holding Gracie's hands and we were marching around the house and I was singing that song. She directed me to our under the counter CD player in the kitchen (which is where we would always play it) and stood there looking up at it waiting for the song. So I put on the CD and she quite enjoyed it. Our dishwasher is just under the CD player and she stood for 20 minutes holding onto the dishwasher and listening to music, just sucking her thumb.

Gracie's appetite continues to go down. Her messiness in eating remains! I'm now at the point where I pretty much change her clothes after lunch and dinner if we are having something really messy...like her favorite goulash. I would like to find some oversize bibs, but have yet to find them anywhere but a special needs online store...and they were just WAY too expensive. I'll continue to keep my eyes open.

Tomorrow Gracie goes to daycare in the morning and I will pick her up around noon as she has a PM&R appointment. Then daddy will take Gracie home and her physical therapist will work with her in the late afternoon. We'll have to figure out how to get a nap in there too.

The spasms continue to be gone, but I must admit I'm a nervous nellie. Anytime she makes the slightest jerking movement, I hold my breath in worry. I know God is in charge...I just have to remind myself of that...OFTEN! We appreciate any continued prayers for Gracie's continued well being.

All our love,
Lisa, Jeff, and Gracie