We Are the Dinosaurs

Crazy busy day with both Michael and I working in the city and Grannie Annie & Sibel on deck at the hospital. In our absence, Sylvie was a perfect angel. Even when 8 doctors came in wearing the yellow disposable 'lab coats' which Sylvie called their costumes. She recognized Ellen and began chatting away with her. Then Sylvie told Dr. Appel she did not want a nose tubey yet wanted to take her port home with her. He agreed.

Sylvie later asked me if she could wear her port to school. For lack of better words, I said fine.

Tomorrow Sylvie has to have the port needles changed because they need to do that every 7 days, Vincristine chemo and then hopefully home. Her platelets are still low at 33 but there is a chance they will rebound tomorrow. Otherwise she'll get a platelet transfusion.

We'll be joined at home by a home care nurse, hopefully one who we have already met because we know and like them. Sylvie has to continue getting TPN nutrition for 14 hours a day through her port and possibly more Fortaz. Michael and I are experts at this point and no longer live in fear of "hep locks" (Heparin). Sylvie will also need to continue the Vancomycin through the weekend and of course, our friend Magnesium.

Provided that Sylvie's counts continue to rise. we're taking her to see Dan Zanes play at the Museum of Natural History in the hall of marine science on Sunday. Last November when we were at the museum, she was a nightmare and altogether ignored the dinosaurs because I had "forgotten" to buy her the princess stickers at Learning Express. Somehow when she dropped them on the floor, I erroneously mistook that for thinking Sylvie did not want them. Au contraire. After an ill-fated sprint through the museum with Sylvie perched on Michael's shoulders we desperatedly tried to make Sylvie forget about the missing stickers. The highlight of the night for me is when Sylvie ever so sweetly said, "Mommy, I'm done" and then dumped a Magnolia Cupcake face down into the palm of my hand while I was cruising up the West Side Highway en route home. I was ticked off to say the least and had a moment I am not proud of. We were at Learning Express the following morning at 10 am where we got the stickers. I clearly could have handled the situation better and needed a little Yogi Mom wisdom from my friend Pam. Her advice as I recall, was to not go to the Museum in November :-). To this day if you ask Sylvie if she saw dinosaurs at the museum, she goes silent. Hopefully we will remedy this. And just wait 'till she sees Laurie Berkner play "We are the Dinosaurs" in 2 weeks at Town Hall!

We are feeling like dinosaurs ourselves. Lack of sleep is not fun.