"No" is the new "Yes"

This is what Sylvie says to me when she's trying to be funny and say NO at the same time. It says a lot about Sylvie!
We've had a great couple of days that began with an amazing weekend with our friends Gabrielle, Steve and their most awesome kids at the beach. We were a little nervous going into it and made a pact that if Sylvie was ill behaved, we would leave before it got ugly. But instead, she was a gem! In the company of kids her own age and especially older ones, Sylvie was out to dazzle them with her moves. We brought the baby stroller so Sylvie could push it around and essentially walk around without us having to support her the whole time. And of course, we brought macaroni and cheese! After lunch we headed to the beach. Let me tell you something, applying sunblock to Sylvie's whole body including her bald head is quite a task! I suppose it's not much different than a baby but still, I take it very seriously.

Sylvie was so excited to splash in the waves that she and Michael were soon running out into the surf. Sylvie had an amazing time which means we did too. I got a little nervous before dinner and was prepared to make a getaway if Sylvie did anything remotely embarrassing but with the exception of Sylvie insisting on watching a Barbie movie, she didn't make a fuss. Michael, Sylvie and I slept together which made Sylvie VERY happy and made us VERY tired when by 6:20 Sylvie was sitting upright demanding to go downstairs and you guessed it, eat a bowl of macaroni and cheese. And 1/2 an avocado. And a Barbara's fig cookie. The next time we are all at Commodities, I am making Sylvie pick out a new cereal. I'm getting exhausted making POUNDS of macaroni and cheese every 3 days. On Sunday, Gabrielle and I went out for a run while Steve was superdad looking after 4 kids under the age of six. It was probably Gabrielle's slowest run ever! I kept telling her to go ahead and leave me in the dust but she was happy to run at my turtle pace. My fast walk might be faster than my normal gait.

I think I made a mistake by bringing one of Sylvie's favorite books called "Walter the Farting Dog" which we bought at a little book store in New Hope last summer. Being a pet owner, dog farts are pretty standard conversation around here although I realize it might not be so standard otherwise! (sorry!!!!!!). Note to self: do not let Sylvie bring the book to school this year!

Later, we went back to the beach where Sylvie once again was a little fish. Then we dug for baby crabs until Sylvie got obsessed with the paddle tennis. Before we overstayed our welcome, we had a quick lunch and headed for home!

Once we had retrieved the retrievers from my parents house, I made a golden beet tart and headed over to Andy & Catherine's for dinner. Samantha and Sylvie were playing in the basement where I realized that as sympathetic as Samantha is towards Sylvie's illness, she's still over a year older... So when I was checking on them in the basement, I found the barricade that Samantha made with Poland Spring bottles to prevent Sylvie from escaping and reaching the stairs. it was kind of funny.

Yesterday, I had to get back in hospital-mode. Despite the massive protest, I put Emla cream on Sylvie's chest along with some Glad Press and Seal and headed to the Reuten outpatient clinic. As I pulled into the parking garage, Jette's dad's giant red truck was in front of us. Sylvie was so excited! And so began our most awesome day with Jette, her sister Nevada and her dad Paul. Nevada carried Sylvie inside where she and Jette treated Sylvie like their little sister and Sylvie loved playing the role. They brought her into Carmen's office where for the first time since April, Sylvie stood up on the scale and the height thing. I nearly cried. Then, the girls came into the exam room while the nurse inserted her port to draw blood. You'd think we were at the circus when all of a sudden, the clowns burst into the room! Sylvie was thrilled to see Nurse Tenderheart! I almost forgot the serious matter at hand: Sylvie's Alpha feta-protein level.

All of Sylvie's blood counts are normal, like that of a healthy child. Normal ANC, platelets, hemoglobin, liver function, magnesium, you name it. We said goodbye to Jette and her family and headed home, not knowing the AFP.

I caught up on work while Sylvie slept and later that afternoon, Jette, Nevada and Paul came over and we went swimming at our neighbors' Norman & Robin's house. They've so generously opened their pool for us to use and after frolicking in the water for literally over an hour, bald little Sylvie in the Cinderella swimsuit that Samantha gave her was a little worn out. Jette and Nevada had a ball too. They're great swimmers and were happy to float Sylvie all over the pool and show off their underwater tricks, cannon balls and swan dives. Shortly after we got home, Michael arrived just in time for Annette to call with Sylvie's AFP: 25.4.

Two weeks ago it was 25.1 so essentially, the number is the same. No news is good news! We're stable. I mean, stable in a dangerous situation but at least it didn't go up exponentially. I asked Annette what happens if it stays in the 20s and she assured me it will either go up or go down.

In the meantime, Sylvie and her pals had an awesome time. Jette & Nevada put barrettes in Sylvie's few strands of hair. They made her feel special and beautiful. They are all beautiful. Sylvie had an amazing day and so did we.