Day 11 of HOPE

Wednesday was a busy, but good day. I didn't write an update though because I finally am feeling the effects of 2 weeks with very little sleep, and decided to call it a night at 9:00, and Sophie and I went to bed.

On Wednesday we started the day at 8:30 with a PT appointment - Sophie did really well. Her job was to pick up a checker with her right hand, climb three steps starting with her right foot and then put the checker into a Connect Four game, then go back down and get another. She figured out how to put enough pressure on her thumb to hold the red checker, and I was so proud. After about 20 times, she was getting tired, but managed to put all the red ones in!

Following the PT appointment, we met with the oncology team for a follow up visit, then had an eye appointment. Sophie had her vision checked, her eyes dilated and then an eye exam. It was good news that her vision is what it should be for a "normal" kid her age, and that there was no visible damage to the eye nerve. (We didn't expect there to be, but never the less it was good to hear that nothing else is "wrong.")

After the eye appointment, we met with the radiologist again before taking her back for sedation and her very first radiation treatment. I watched the radiation treatment on a computer screen from another room. It was informative, but scary too; pink cage/mask covering her face, the oxygen mask over it, her eyes taped shut and her tiny little body strapped to a table in a room by herself because it is not safe for others to be exposed to the beams, was not a pleasant sight. The good thing is that the treatment itself only lasts 15 minutes, but waking up from sedation is the tough part.

We were scheduled for an OT appointment at 2:30, but we asked to cancel it because we felt that Sophie had already had a long day. No problem they told us, but we are hoping to reschedule it so that Sophie might be fitted for some sort of splint that will keep her thumb flexed.

When we got back to the apartment, Sophie took her usual 45 minute nap. Her new favorite things is for me to scratch her back. Just when I think she is asleep, she will wake up and say "scratch", or "scratch harder" or "scratch faster" or "scratch slower." I usually do it until my arm is numb, then I tell her, I'll start again in 5 minutes after my arms rests. The whole back scratching lasts longer than the nap, but it's worth it! In fact this morning when I begged her to stay asleep because my head was pounding, she told me "Roll over and pull up your shirt, I'll scratch your back."

After she woke, she was in a great mood, laughing, and playing and listening to stories with Grandpa. She was a lot more receptive to others and we all commented on how well she seemed to be doing. It was such a nice change of pace. She has been wearing her electromagnetic shield and her St. Anthony medal around her neck, and on Wednesday we added the Fr. Solanus scapula to her pink leather string. I have to believe those things are helping!

Wednesday was also the first day of Sophie's medicine regimen. In addition to the 4mg of decadron and the 15 mg of prevacid that she takes twice a day, she now needs to take 100mg of zarnestra in the am and 75mg in the evening, along with a liquid anti nausea medicine that she takes every 8 hours. On Friday she will begin taking the septra antibiotic that she'll take 3 times a day for 3 days a week. We have been mixing the meds with applesauce, jello, Popsicles, and ginger ale. Sophie has been a trooper most of the time, but can still be resistant when she is feeling grumpy.

Here we are back at the apartment on Thursday, after completing another PT appointment, 2 clinic visits and her second radiation treatment. Sophie did well again, and Marc watched this time. His reaction was the same as mine. Sophie looks so helpless, but we know that this is what will give us more time with her.

Sophie had another awesome mail day. She gets so excited opening the packages, and she told me, "If there is wrapping paper, it must be for me." We really appreciate those of you who took the time to shop and choose things that you know Sophie will like. It makes her day, and so it also makes ours!

The weather here is still beautiful, and we are planning on finally taking our trip to Target to find a stroller that is big enough to hold Sophie so we can venture to the zoo and museum this week end. Baby Sarah has enjoyed her daily walks with Grandma, but our current stroller is not big enough for Sophie.

We have 29 radiation treatments left! Tomorrow we have a 10:00 radiation appointment, and then the OT reschedule in the afternoon. We are looking forward to an earlier radiation appointment, so Sophie can eat sooner, and also to a relaxing week end.

We have been so lucky to have my parents here. Marc and I were just saying that it has been amazing. Our clothes seem to magically get washed, dried and folded. All the groceries are bought, we don't worry if Sarah has formula or baby food, or if her bottles are clean, we get warm meals served, trips up and back to the hospital, and constant offers to help and do whatever we need; even things we don't need, or know that we need. Ask God to remember Mom and Dad in your prayers too. Please keep the prayers for Sophie's miracle coming, they are helping us get through the days.