Snowy Monday

The restless nights continued. Gracie was up every two hours for a bottle and I awoke more exhausted than I have been in a long time. Gracie, however, woke up in a good mood. Gracie has become more and more puffy, outgrowing all of her clothes. This has been quite noticeable over the last week. I'm sure all the night feedings don't help this cause. I went to dress her this morning and found that she pretty much had nothing that fit over her tummy. This prompted a trip to the mall, where we bought lots of 4T shirts and sweatshirts to keep her warm until her tummy starts to go down. She should be good now as we started to reduce the Prednisolone today. Only two doses today instead of the normal three. I noticed a difference in her overall mood and willingness to play on her own for short bits of time. She even sat down with me and we read 4 or 5 books. With the three doses, she was just too restless to sit that long. She still continues to want to be held and bounced, but we have some breaks.

Gracie took a two hour nap, although it was a bit restless, but awoke with smiles. At 6 p.m. we had a blood draw at the clinic and Gracie did not flinch or cry for this. She was a brave girl and just sucked her thumb and held her blanket. I think it helps that she now knows all of the lab techs and they know her. We walk up to check in and we have them all say "Hey, it's Gracie!" That is before we even tell them who we are or give her clinic number. She's becoming a popular little girl! :)

We are happy to say that with the reduction in the meds Gracie is still spasm free!!!! Our prayers are that she continues to be. If you have a minute we would appreciate your prayers for the same. Thank you!

Love,
Lisa, Jeff, and Gracie