Please Pray All Day on Tuesday

Hello everyone. I'm glad Marc posted last night. Although I do like keeping everyone informed, I also like to be able to sit back sometimes and see the situation from another viewpoint.

After our appointments tomorrow, we are headed to Brentwood, TN to meet with a spiritual healer that we heard about through my Mom's neighbor. He said he doesn't know how to explain the gift he has, but that he has seen some amazing things happen. We believe him, so Marc, Sophie and I will make the 3 1/2 hour drive, meet with him, and then stay in a hotel overnight. We'll have to get up real early to return back to Memphis for our 10:00am appointment on Wednesday, but we don't mind. His words were "there is power in numbers" and he suggested that we ask everyone we know, and even those we don't, to pray all day for Sophie, especially at 7:00pm.

My sister left on Sunday (after being here for nine days) just a few hours before my friend Andrea arrived. Sarah, of course was a HUGE help, as she has been throughout this entire ordeal. Sophie LOVED playing with her, and we all loved and appreciated her help with all the other boring but necessary tasks that go into living in our temporary home, as well as caring for a less than 100% 3 year old, as well as an almost nine month old who has just learned to crawl and is making her way all around this apartment! My sister Sarah was able to come to St. Jude's with me for a couple appointments, and she also ran many errands. She slept in bed with Sophie and me, which was quite a feat considering Sophie takes up the majority of the bed, and my sister is now almost 30 weeks pregnant! Sarah got to experience Sophie's multiple nightly wakings, and Sophie even allowed Sarah to take her to the bathroom a couple times. It was a small but much appreciated break for me. I know Uncle Matt really missed her while she was gone, and we appreciate their sacrifices because Sarah does not get paid when she is not working.

Andrea's visit was short but so sweet. She was here, just 30 hours but did so much. My parents and sister went to church on Saturday night so that Sarah would be ready to leave for the airport at 8:00am and also so my Dad would be able to pick up Andrea at 10:30am. I stayed "home" with my 2 girls alone for the first time since diagnosis; it was definitely much different than it was when we were home in Avon Lake! They were both pretty needy at first, but eventually settled down. I went to church alone on Sunday and when I walked in the door from church, I was anxious to see how Sophie would be responding to Andrea being here. I walked into the bedroom - they were in the closet, or as they called it "the office" doing crafts with all the supplies that Andrea brought. Sophie told me to "go on out". I am thrilled that Sophie is willing to play and interact with others; unfortunately I still get all the trips to the potty, as well as the trips to St. Jude for appointments when Sophie is far from happy.

We ventured out on Sunday afternoon; the weather was amazing. We drove downtown, went on a carriage ride, stopped at the Crepe Maker, saw the ducks at The Peabody, and walked around the mall with both girls in tow. Boy was I glad to have my family and Andrea with me! Two strollers and all the belongings seemed like a lot to manage for one person! Anyway, the week end was fun and we are so grateful for all of you family and friends who give so unselfishly. Andrea treated my Mom and me to foot massages and we stayed up talking until 1:30 am. Andrea cooked a couple great dinners, and as I type, my family is enjoying the pot roast and vegetables she put in the oven to cook this afternoon as she headed out the door to the airport.

From the medical front, we are still down on the decadron to 2mg a day. Friday was the first day of this dose, and I was a little nervous on Saturday morning, because Sophie's breathing seemed labored and she was extra grumpy. I gave her an additional 1/2 milligram...just for peace of mind. She perked up; I'm not sure if it was because of the additional decadron or because we had a mini picnic and played at the Ronald McDonald playground before the rain moved in. Other than the above, her symptoms remain the same, except for some significant improvement in the use of her right hand, and in her smile. She has been doing much better in physical therapy, and tried a few times today to walk the bridge without my assistance. It is still hard to watch my daughter struggle to stay on the balance beam after watching her in gymnastics less than a year ago, flying down the high beam and jumping off the end.

Her symptoms seem to be improving differently from how the doctors told us. We were told that her limp and balance would improve first, and her smile last. I think we have had so many people playing with her and making her laugh lately, that her smile can't help but improve!

Today was pretty typical for a Monday. We had the usual weekly struggle with the port access. I try to comfort her, but she starts with her, "I don't want to lift my shirt." even before we leave the apartment. And when she sees me coming with the numbing cream and band-aid, she starts whining. For the most part, I still can't get a word in. She tells me, "No, don't talk, just make them close my shirt."

Tomorrow we have labs before radiation which is another sore spot. Something about watching your own blood going into a tube from another tube in your chest just really puts Sophie over the edge. We could use some extra prayers at 10:15am!

I will reiterate the gratitude that Marc expressed in yesterday's post. Although I did not witness the event, everyone told me how truly amazing it was. I've heard from many people how well organized it was, and how everyone was so kind and generous and most importantly how many people said they were inspired by Sophie's story. I hear Sophie IS making a difference in this world. Just as I always knew she would. We are so grateful for those of you who had big "jobs" but also for those of you who had small "jobs." We know it was the work of the "team" that made the event a success.

Please please join us in prayer for Sophie's healing all day Tuesday and especially at 7:00pm as we venture down another road in attempt of finding our miracle.

Thanks again, from the bottom of our hearts to all of you who are supporting us in a million different ways. We realize the sacrifices that many of you make, including time away from your own families and work, in order to dedicate yourselves to helping us. Please keep the faith and keep praying for Sophie's miracle.