Slow Runner

No sooner than we put Sylvie in her crib last night, she proceeded to vomit the magnesium and Bactrim all over her pillow wedge, favorite flower sheet and handy mattress cover that we took from NYU Hospital when Sylvie was born. Somehow the princess nightgown remained unharmed. Note to self: Space meds apart! It's a little tricky to manage the different medications on the weekends because Sylvie is likely in pain and therefore getting Tylenol with Codeine and also needs Bactrim antibiotic 2x daily. This in addition to the magnesium 4x daily and neupogen shot 1x daily. "Luckily" Sylvie isn't constipated or we'd have give her Colace and Senekot, too. Let's not forget about the ND pump. Sylvie ideally needs between 850-1000 calories daily therefore I am constantly calculating how much food she's getting hourly. I admit, I freaked out a little on Thursday because the pump had been off for the 4.5 hours we were at the hospital and I was determined for Sylvie to get her minimum intake. It's inexcusable if her weight loss is my fault and I take this very seriously. If she was feeling better, the fewer calories would make Sylvie hungry. Not the case right now. Worth noting that Sylvie's medical team is not as concerned as we are. Our parents have offered to babysit but it's hard enough for us to maintain the daily schedule so we kindly decline the offers.

Inasmuch as it seems like we have our shit together and a daily routine perfectly mapped out, I can assure you we are flying by the seat of our pants most of the time (even though I write a minute-by-minute schedule in a day planner). Gross things happen all the time and they never seem to be less scary or disgusting. We argue over the smallest things just because we're too tired to think of better ways to communicate and hope deep down in our hearts that soon this will be behind us and our life will get back to 'normal' sometime in the near distant future.

I volunteered to sleep on Sylvie's shagadelic carpet last night but Michael and Lucky had already settled down with their pillows and blankets. We've had many offers for loaner spare and air mattresses (thank you!) but mentally it signifies permanence to me so I'd rather tough it out. At about 4 am Sylvie began to heave in her sleep so Michael slowed the pump down. At 5 am she had a bit of an explosion from the other end. And at 6 am she was wide awake, in pain, and got her first dose of Tylenol with Codeine for the day. By half past 6, Sylvie and I went downstairs so that Michael could get some sleep. I snuck out for yoga and when I got home, Sylvie wanted to go to the book store. I gathered our stuff yet Michael and I were a little wary because Sylvie really looked like she was going to throw up and I'd rather have that happen in the house than... in the car... in Bookends... Happy to say it all went well. When we got home, Sylvie wanted to take Lucky for a walk in her 'bumpy' stroller so off we went! We first cruised past Sammy's house to see if she was out and about (nope). 40 minutes later we got home and my paranoia about calorie counting set in. Sylvie spent the rest of the day chillin like a villian on the couch watching Princess movies, playing with that Princess computer, an interactive Princess book and numerous coloring books. You'd be amazed at how much a toddler can do while never leaving the sofa. My parents dropped by to see Sylvie while I made ribollita in the kitchen. My dad's fraternity brother's son is the head of oncology at the Children's Hospital in Atlanta and worked on the chemotherapy protocol that Sylvie is on (the introduction of a 4th chemo drug whereas most children only get 3). Small world. (And my friend Jon Baum from college went to high school with Dr. Harris's daughters!). I digress. After Sylvie fell asleep, I went out for a run. A very slow run! I figure that if our friends and family are going to be running Memorial Day weekend in honor of Sylvie, well then I have to be able to run more than a mile, too! Worth noting that many of the yoga postures I practice almost daily may be very good for my heart but it is quite different than running three miles! I knew that I was running somewhere near Dr. Rosen's house and if I had my Blackberry with me, I would have texted him to see if he could let me use his bathroom and then drive me home.

Every time we see a glimmer of the old Sylvie, it makes us hopeful and INCREDIBLY happy. My friend Debbie gave her yesterday a crazy musical Yo Gabba Gabba microphone and a plush character from the show and Sylvie did some funky dance moves with her hands. We used to play music, watch videos on YouTube and dance around every morning and evening so the house seems a little dark not having done that for 6 weeks. As a test, I put on The Ting Tings "That's Not My Name" this afternoon and Sylvie lit up while my mom and I did freaky synchronized dance moves in the family room. Tomorrow if we're feeling adventurous, I'll put on the Cyndi Lauper "Girls Just Want to Have Fun" video which is a close second place behind The Ting Tings. Worth noting the British hipsters cover Altered Image's "Happy Birthday" on the Yo Gabba Gabba soundtrack.

I just boiled a dozen eggs so that we can tie dye them tomorrow with Granny Annie. Sibel, being Turkish, has never heard of this and I have never done it myself (the hard-boiled egg on the Passover seder plate has always been a plain white egg!) so this will be interesting. You'd think I live on Mars, but today was the first time I saw white eggs tattooed with a logo!