Wednesday March 28, 2007

It's time for an update, and Emily gave me the go ahead. Aunt Sarah arrived Saturday morning, and Jen and Lance wore the apron in the kitchen, making some great Swedish meatballs. They also treated us to dinner from the Spaghetti Warehouse on Friday night --- we all had meatless meals, and they were great.

Sophie loves the weekend, and she had lots of time to draw and design sticker pages with Aunt Sarah. Her latest fun thing to do is make lists in her special notebook with Aunt Sarah --- there's a lot of Emily in Sophie ---Miss Organization. Sophie had Aunt Sarah list all the food, tasks, and necessities for the party she wants to have to welcome back Daddy on Sunday. The sign on the apartment door says "Welcome to the best-ever friends party." There are hand-made pictures all over the walls. (We hope that the paint stays on the walls when the pictures come down.)

Sophie is doing more with her right hand, and Sonya, the OT, said she sees a noticeable improvement. She is walking a little more on her own, and will often allow Aunt Sarah to help with the bedtime ritual. Sophie has become more adamant about not wanting to go to St. Jude's for anything and everything, and fusses quite a bit about leaving the apartment. Her port seems to create the most misery for her --- she won't look at it, and doesn't want anybody else to see it. I still get to cover it with washcloths while she is bathing. However, she now takes baths with her new bathing suit from Jen and Lance. A bath in a bathing suit is better than no bath at all, so that's been the plan.

Emily decided to create a food chart for Sophie to somewhat control the amount she eats. The squares are filled in after each meal and snack, and although Sophie still talks non-stop about the food she will eat each day and each meal, she now realizes that there's a limit, and once the squares are filled in, there won't be anymore food. Actually, the chart system has also made taking her medicine easier. In fact she asks to take her medicine since the reward for taking her medicine has become a special treat, not a square to be filled in on the chart. This new system, plus the fact that we've moved Sarah's crib to the closet (not, as mean as it sounds, it's a large walk-in closet) has helped us settle into a pretty comfortable routine. The food issue consumed a big part of the day, and Sarah's and Sophie's waking consumed a large part of the night. We discovered that my and Frank's snoring was keeping Sarah awake, just as much as her restlessness was keeping us awake. After we moved her crib, she slept through the night, and took two good naps during the day on Tuesday. We are on the second day of the new sleeping quarters for Sarah and she seems to have adjusted quite well. Last night, I watched the monitor until 11:30 p.m., and then decided that she really would be okay. Frank went and woke her up in the afternoon. Aunt Sarah couldn't convince Grandpa that just because it was dark in the closet, it wasn't suffocating.

Emily talks to Marc everyday, and he told her that the Avon Lake and Philip Morris contingency are really working overtime for this Saturday's fundraising dinner. Both Emily and Marc are amazed at the tremendous support they are receiving.

Sophie talks so maturely and openly about her schedule at St. Jude's. Just today Sophie was telling Grandpa about her physical therapy and Terry (her therapist) who said she had to do a good job. Although St. Jude's is not fun for Sophie, she did get a big laugh from a loudspeaker page for her to report to assessment triage since the page was for a "Sophie Qwa-lee."

Emily hasn't posted since Friday, and it's not because Marc took the laptop back to Avon Lake --- she's just been busy and enjoying more fun and play time with Sophie. And Sophie has been busy with her party preparations.

On the medical front, Sophie's steroid dosage has been reduced to 3mg. a day, and Dr. Krasin hopes that on Friday the dose will be down to 2mg. as long as Sophie's symptoms appear stable. Her antibiotics are now being given in a once-a-month IV and she is now getting her first daily dose of steroids and Zofran through her IV during radiation sedation, reducing the amount of meds Emily has to give to her at home, making everyone at the "appointment"(Sophie's first version of apartment) a little happier. Emily says that as she brushes Sophie's hair, she can tell that Sophie is starting to lose some. It's not that blatantly noticeable, but the hair on her pillow is tell tale. Today is Day 16 of her radiation treatment and that's past the half-way mark. We're on the downhill now.

The amazing thing about Sophie is that her mind and her memory are sharp as ever. She observes what each nurse and doctor wears; she asks for cookies from "Miss Cordelia's" (the local store)and just today corrected Valerie, her nurse, who asked her about her picnic at the park. Sophie responded with, "It wasn't at the park, it was at the Mississippi." Her accuracy of expression and attention to detail amuses all of us, and makes us smile when we really need it. She continues to be ever-watchful of Baby Sarah, and makes sure that everybody picks up the little things that Sarah "could choke on." Today when we were all oohing and aahing over the cute frog chair that "jumped into Aunt Toni's basket" and made its way to Memphis, little Sophie was the only one paying close attention to Sarah, as we heard her shout, "No, Sarah!" Just then Sarah was chomping down on a styrofoam packaging peanut from the frog chair. Sophie's a much-needed big sister and a real hoot.

Frank says that these should all be Emily's words, so I think he's mildly suggesting that I not write any more posts. I probably wouldn't want to be responsible for these anyway, since I started this at 3:00 p.m. and I am finishing now at 9:30 p.m. I see why Emily begins late at night with her posts -- fewer interruptions and greater ability to think.

All of us here in Memphis really appreciate the love, support, and prayers that you have sent our way. We are humbled by your generosity and desire to help.

Grandma Miklaski