4 Treatments to Go!

Today was the last full week here at St. Jude, and we can't wait to go home even though the thought of heading back to reality makes us a little nervous. The realization that our life in Avon Lake will be very different from what is was before is hard to describe. But before we talk about home, we must appreciate the present.

Sophie's mood still is great. She has had a lot more energy these past few days. She went on walk to the Mississippi with Grandpa, and didn't stay in the stroller much at all. Wednesday she climbed up the 39 steps to the apartment for the first time. She just needed a little support from Grandma and me. Today she went with Marc to Target, and he said she was wonderful. She continues to say some hilarious things that make us all crack up. She keeps asking to go back and get her sleepy medicine. I think she's pretty fond of the head anesthesiologist, who has been wonderful with Sophie. Today she told me that he was her favorite.

Marc and I took Sophie to the mall again on Wednesday. She wanted to ride the merry go round. After our first ride, she wanted to do it again, so we stepped up to pay for the ticket. We were the only ones there in the middle of the day, and it took me by surprise when we got off and the kind old lady selling tickets asked me if Sophie was disabled because she had noticed she was walking funny. Up until this point, I haven't thought of Sophie as disabled. The lady simply wanted to know, so that Sophie could ride free. We went on the merry go round 2 more times after that.

Wednesday she was sitting straight up in recovery and was wide awake which was a nice change. We haven't used the special sleeping underwear in radiation the last couple days, and there have been NO accidents. She slept through the night last night from 11:30 to 5:30, so I'm hopeful that soon she will be back to sleeping all night.

She has been doing well with her appointments, and spent some time today throwing balls in the apartment. We met with the speech pathologist today, who wanted to evaluate Sophie's facial muscles to see if she could suggest some exercises that we can do once we get home. Sophie is still drooling a little from the left side which was always the stronger...I've mentioned that before in her posts. We pray that the nerves are being affected by the radiation induced swelling, and that the drooling and weakness has nothing to do with the tumor.

We've accepted that her walk may take some time to get back to normal, and as long as her personality is back, we can deal with the walk, hair loss and weight gain.

We've gotten the okay to reduce the steroids to 1/2 mg a day. The radiologist and anesthesiologist really want to see a reduction in the facial weight gain and swelling because Sophie has been having some trouble breathing during radiation. The mask is fitting so tight that it is forcing her airway to be compressed. They were able to elevate the mask a little, but if her face gets anymore swollen, a new mask will have to be made, and that could set us back a day. We have been advised to really limit the amount of salt in Sophie's diet, and that has been difficult considering her favorite foods lately have been olives and pickles. But we can do anything for a week!

My parents left this morning. The amount of help and support they have given us is impossible to explain. We are so grateful for all they have done and for all they continue to do. I thank God everyday for blessing me with the best parents in the world.

Dad made the 3 hour drive to Nashville with Mom and baby Sarah. From there my Mom got on a plane with Sarah and my Dad continued on the drive, and is probably in Cincinnati as I type. It was sad to see them go, and made us wish we could go too.

We will miss little Sarah's babbling. She has really grown and changed in the past 7 weeks. She is crawling all over the place and pulling up. My parents are convinced she will be taking some steps by the end of the month. Sophie is the best big sister ever, and Sarah loves her. It is going to be quiet here without them, but we are hoping the 3 of us will be able to get out and do something fun this week end.

Thank you all for your constant prayers and support. We ask that you continue to remember Sophie in your prayers and that you beg God to grant Sophie her miracle. 4 more treatments to go...not that we are counting...