When it rains it pours...

So the title of this post may seem a bit ominous, but actually, just as the rain and cool temperatures have subsided over the past few days, things have been good. Sophie is milling about the neighborhood like a regular little girl now. Even playing in the dirt! Right now it's pouring good times!


Since her central line catheter has been removed from her chest, she is even more bubbly than usual. She has always had such charm, with a party seemingly following her around all the time waiting to happen, but now, with no real restrictions, she is so full of life and it's just wonderful to watch!

Since Easter, there have been some difficult times, including a stomach virus that plagued the house putting Sophie back on IV fluids for a few days, keeping Zach home from school for a day and ending a night at CPK early for Mike. Mom got a respiratory version of the virus lasting for several days, but never enough beyond annoying to stop regular activities - and there were many!

We've also been struggling with oral medications for Soph. She has always hated any medications by mouth, but without the central line, there's just no other way (and we want to avoid putting line back at all costs!) We tried all sorts of creative things, like oral disintegrating tablets, a flavored liquid version, and just plain old pills. We tried hiding it in food - yogurt, frozen yogurt, spinach dip, olives, berries, bananas, and other things -- no luck! Finally we tried grinding the pills and putting them in a little bit of apple juice. We put a gummy candy in her mouth and she takes sips and eats more gummies until it's done, usually about 20 minutes. Then we have a big dancing and clapping party to celebrate! Sophie takes any opportunity during the day to tell others that, "I take my medicine, Yay!" We're not arguing with the process, it works!

We've been spending a great deal of time enjoying home lately. The weather this weekend kept the kids out and playing late into the evening each day. Sophie wouldn't even stop to take naps, but fell asleep before her head hit the pillow!

Zach is doing great lately, he's reading and spelling and enjoying math too. He raised almost $200 for St. Jude's Children's Hospital as part of a school sponsored Math-a-Thon fundraiser. It's a really cool program that has the students do math to earn money - who wooda thunk?!? Even better most of it was done on-line. You can check it out at www.mathathon.org. He's been really busy doing Kindergarten stuff, he even lost another tooth last week. A front one at that. He's not really listhping, but it sure looks cute! Tomorrow he heads to the National Zoo for a field trip and Dad is even a chaperon. There's great weather in store and hopefully we'll get some great pictures to post!

We are so happy to report good times, and hope that your lives are doing well also. Best to you all, until next time... Peace!

Bumpity Bump Bump...

Happy Easter everyone! Just for the record, if you have ever been on the guest list for a holiday dinner at out house, please - with all due respect - do not expect another invitation soon! (just kidding of course!) This is our third major holiday since Sophie got sick, and the third time we've spent one in the hospital! Can you believe it. We joke that next time we'll call ahead for reservations!

In any event, the Easter bunny found us and, as usual, we will continue to celebrate for the next week or so.

Sophie is improving. Of course, she doesn't look or act sick. She's tearing up C53 as usual and making new friends along the way. Apparently the infection was in her external catheter, so it had to be removed on Saturday. She has a regular IV in her right wrist now until her blood cultures are clear. we are trying oral versions of her regular, daily medications to see if she will tolerate them. If this works, we can forgoe having a new broviac catheter installed in her chest. At thispoint it's all up to Soph. She's just too little yet to swallow pills with skill. This story is to be continued...

Well, we hope the bunny found you too, and that you've had a hoppy holiday! Till next time... Peace!

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!