Thursday, April 05, 2007

Bumps in the road...

So the last post left us excited and looking at the road ahead filled with improvements and a return to 'normal' life. We are still thrilled with the news of Sophie's remission, and optimistic about or future. With that said, this is turning out to be a trying couple of weeks!

There are great things, like Spring Break from school this week - too bad it was on my calendar for next week (oops!) We've managed to get some fun time in for Zach after all, especially much needed one-on-one time with Mom and Dad. On the down side, Scheduling is much more difficult than I ever thought possible after returning to work. There just aren't enough hours in the day, no matter what your circumstances! Sophie has been waking in the night again and practicing her fancy footwork on our bodies as we try to sleep (the up side, her leg strength is quite improved - the down, we're battered, bruised and tired!)

Our quest for just the right med for Zach's ADHD is nearing the end as we now adjust dosage to see the degree of effectiveness throughout the day. Zach's school also just sent a note indicating that he failed the last vision test - apparently when Zach was mixing up letters in reading, it wasn't because he was being difficult or lazy, rather they were/are too blurry for him to distinguish well - how bout that!?! Taking control of the situation, Zach promptly selected a pair of 1.5 magnification reading glasses from the dollar bin at Target. He was disappointed in the selection of shapes and colors, but finally decided on a lovely hot pink plaid pair - thankfully they only lasted a few hours and then were broken beyond repair - Awwww (Chuckle!).

Next on our list of things to do was to watch Sophie's eyes for further signs of the O in OMS (opsoclonus, or dancing eyes). There are traces, but it can be deceiving, so we're going to stay on the current course of increased steroids until we can get a good neurological consult - probably in a week or so, it's just a matter of scheduling!?! Well, that was put on hold just as Soph came down with a fever Wednesday evening. It was quite high - 102.8, so we headed off to the emergency room after a consultation with the oncologist. This was anticipated to be routine blood work, line culture, and a dose of antibiotics, but the fever would reduce, but it actually rose a bit, so they decided to admit her. There were no beds in the general peds ward, so we ended up in the Pediatric ICU - much noisier and disruptive by design than the regular ward. Sophie got a little sleep, Mom on the other hand, not much! Today we found that there is a possible infection in her line, so what started as a 3-4 hour trip to the ER may turn into a 3-4 day visit to C53. While it's nice to see the friendly and familiar faces at GUH, it would be nice to celebrate a holiday at home! Hey, maybe we'll just get Chinese take-out like we did for Christmas and call it a great day! We'll play it by ear.

All in all things are good, but as you can see, very hectic. We are thankful for those we've been able to see and talk to lately, longing for those we have not. We are wishing safety and joy to those who will travel this holiday weekend and beyond. And sending our thanks and love to you all, wherever you are and wherever you are going! Peace.

As promised, here's some recent, and not so recent pics - enjoy!

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