Friday, March 23, 2007

Another week has come and gone. Sophie has now completed 13 radiation treatments, and we are starting to see some small changes which seem to have happened overnight. Sophie has a tiny bit of her smile back; when I say tiny, I mean tiny. She is walking more; still with a limp and off balance, but at least she is willing to try. Her personality and anxiety are improving. She went to the zoo on Tuesday afternoon with Grandma, Grandpa, and Daddy. I stayed home with Sarah who was supposed to be taking a nap so I could get some rest; that didn't happen, but it was good to see Sophie go somewhere without me. Yesterday she went on a walk down to the river with just Grandma and Grandpa for a little evening picnic, even after I said I was staying here. We aren't sure if the changes are because of the radiation, or because we got the okay on Thursday to reduce her steroid dose to 4mg a day. We are leaning toward crediting the radiation with the improvement because 4mg of decadron was the amount that she was taking when we got here, and she was terribly anxious and pretty close to bi polar! I am surely grateful for the little things!

Her sleep habits are about the same. Last night I counted the number of times she woke up in the middle of the night between 10:30pm and 1:00am. She sat up 8 times - either having to go to the bathroom or asking for a drink. She did sleep from 2:00-4:00am though...at least I think she did because I know I didn't look at the clock during those hours! I'm hoping she will start sleeping better as the radiation progresses. She hasn't been as tired during the day so she hasn't taken a nap the past couple of days. There have been times at night when she will agree to lay down without me, and sometimes she actually falls asleep without me in bed with her.

We've had a few delays in the actual radiation procedure due to the increase in the size of Sophie's face. Her cheeks and chin are pretty big. Now when she comes out of recovery, she has little dots all over her face from the mask (which slightly resembles a plastic screen.) She is almost unrecognizable to me. We're hoping that she will begin to lose some of the weight now that we have reduced the steroids, and now that she is moving around a little more. If not, they will do another simulation and make a new mask and realign the radiation points. This would not delay the completion of her treatment, but would require her to be sedated longer.

Sophie had an unbelievable time with Aunt Leslie, and now my friends Jen and Lance are here, and I can hear Sophie cracking up while painting in the other room, and that brings a HUGE smile to my face. My sister Sarah comes tomorrow and will be here through next Sunday. It has been a blessing to have Leslie, Jen and Lance and now Sarah take time out of their busy lives to come here, dedicate their time to making Sophie laugh, and offer to help in any way. Again, God is showing us his love through others.

Marc went home to Avon Lake to work for a week and to take care of all the things we had left unfinished when we dropped everything to come here. He will stay there through next week end so he can attend the K of C fundraiser on March 31 and then will come back for the remainder of the treatment. Say an extra prayer for Marc, who has said it has been extremely hard to be back home and to see all the pictures of our old Sophie all over the house. I think it must be so difficult to be there alone with no kids demanding his time 100% of the day. We can't wait to have him back.

Sophie is still having a hard time dealing with her port. Even during the week when it is accessed, she'll cry at just the thought of having to lift her shirt. This breaks my heart because she gets so nervous and self conscious. The needle was removed after her radiation this morning so I thought she would be excited to really get in the tub. She wasn't, and it took us convincing her that she could wear her swimming suit and pretend she was at the beach to get her to agree. I keep thinking that she will get used to the idea of the port, but she seems to be getting worse.

Right now she is talking about all the food she can eat in the morning because it is Saturday and she doesn't have to wait to eat. So unfortunately her appetite is still insatiable. Again, we are hoping that the reduction in steroids will help; she continues to want to eat and eat until she is stuffed. Grandma introduced Sophie to a "special candy bar" - PRUNES! We've really pulled the wool over her eyes; she continues to eat them which has been helping her digestion.

We are grateful for all the kind thoughts, words, and prayers, as well as for the packages that continue to come in the mail. We definitely still need the prayers; they are getting us through the days. Please say an extra prayer that these wonderful doctors and researchers will be filled with the knowledge to find a cure for this horrible disease, so that Sophie and all the other children suffering will be cured.