Christmas Eve

Here it is Christmas Eve, the day before Jesus' birthday, and 42 days since we received Gracie's diagnosis of Infantile Spasms. A calmness and great optimism have settled in with me this day. I have always felt God's presence, I have always known He was listening to me, I have always known that He has heard all of our prayers for Gracie, but I think He had some lessens for Jeff and I in all of this, especially me. I have learned not to be such a control freak and to truly trust in Him. I have learned patience, I have learned that it's okay to cry, I have been reminded what is important in life. With these lessens and so many more learned, I believe that the healing of Gracie's IS is near. Gracie had only 4 spasms today. Two of them at 1:30 a.m. while she was having her night bottle (yes, we're back to night feedings - the steroids increase appetite greatly) and the other two this morning when she was napping on my shoulder. Whether or not I get my Christmas wish of a zero spasm day or not, I am prayerful and optimistic that a zero spasm day is close by.

I talked with Gracie's substitute pediatric neurologist today. The plan is to increase the prednisolone to three doses a day rather than 2. We really need to stop the spasms, so a medicine increase is the next step. I checked to see if we could hold off on increasing until Friday so that we could enjoy Christmas with family without worrying about increased mood swings, irritability, and restlessness. I was given the okay.

Uncle Mitch and Aunt Jeryl stopped by for a short time today and Gracie gave them a few shy smiles and demonstrated her new walking abilities.

Jeff, Gracie, and I went to the Christmas Eve service at Jeff's church this evening. It was beautiful. Gracie was as good as gold. She loved the music. Most of the songs were traditional Christmas hymns and songs that I sing to her at night when she is falling asleep. Perhaps she thought it was bedtime. Santa came to our house while we were at church, but Gracie wasn't too into opening presents. Perhaps she is wiser than her years and knows the true meaning of Christmas has nothing to do with Santa!! Hmmm, we'll test that theory next year.

To all who are praying for us, to all who read this blog, our wish is for you to have a blessed Christmas. Whether you are with family, friends, or spending the holiday solo this year, you are in our prayers.

All of our love,
Lisa, Jeff, and Gracie