Saturday Night's (Alright for Fighting)

For my birthday yesterday, my mom gave me something in the pretty sexy category which I can mention because we're all friends here. She so desperately wants to try and snap me out of my funk and remind me there's more to life than Sylvie's illness. I don't think Sylvie would have appreciated it last night when I slept on the floor of her room but I love it, appreciate the message and anxiously await for our lives to return to normal. If I can let my mother-in-law root around my underwear drawer picking things for me to wear at the hospital over the past month in which she perfectly matched my t-shirts to my undergarments, then my mom can buy me lingerie too!

Nice segue... I'm still sleep deprived.

I never thought Michael and I would be excited about Sylvie fighting with us about bedtime but as Sylvie rose from the couch and her codeine haze at around 8:00 pm tonight and declared she wanted to paint a picture at her little yellow table with her green paint brush, Michael and I gave each other 'thumbs up' signals behind Sylvie's pink princess back.

Today was the most normal day we've had in over a month. Sylvie woke at 7, we moved from her bedroom to ours and hung out under the covers for a little while longer with OJ trying to sneak up along side.

Like yesterday and like tomorrow, the day was spent staring at the ND pump which is supposed to run for 20 hours a day, filling oral syringes with light pink Bactrim, hot pink Magnesium, orange Tylenol with codeine, clear Zofran. It's like having a newborn baby all over again and instead of worrying about feeding times, we're locked in to medicating times. If Sylvie actually eats food, she doesn't need as much food from the ND tube. We got a hopeful letter from Oxford that they may pay for the Complete liquid food if we provide them more documentation. So far Dr. Harris said in a letter to them that the cancer has made Sylvie anorexic (would not pay) and that she hasn't eaten a solid meal in 2+ weeks and would die without it (still won't pay). Each case costs $100 and I think at this rate we'll go through 2 per week.

Michael and I traded off with me going to yoga and him going to the gym. I gave him the task of going to both Town & Country pharmacies today. I think one of the cash registers should have a plaque in honor of Sylvie Hughes. While he was running errands, the home nurse dropped by and I officially gave Sylvie a shot all by myself today. I mean, Sibel had to hold her down but it wasn't that bad. Sylvie and I both survived. Shortly thereafter, Sylvie actually wanted to go outside so we bundled up and headed into the great outdoors. We were pretty excited to see Laura and Kate outside.

We had lots of visitors and well wishes today including neighbors who I had not personally met before and am now eager to get to know better. Sylvie even made a new friend! Linder came out from NYC and saw Casa Hughes for the first time. She brought a beautiful African Violet plant in a pink pot for Sylvie but my own little princess thought Lisa was a nurse and was very suspicious. Then Jen dropped by with the radiant baby Ellie and freshly baked Irish soda bread. Jen amazes me. She may not use her cooking skills often but she's a 3-star Michelin chef when she does. In the middle of the party (Sylvie soundly asleep on the couch), Karen from The Whole Child dropped by with more amazing recipes for Sylvie and her healing Reiki hands. The Karas clan came by mostly because Catherine wanted more of Ann's chocolate birthday cake (she sent me a desperate text message the night before for more cake!) followed by my brother, Caryn and Megan. Megan is such a sweetheart and wanted to snuggle with Sylvie.

Getting Sylvie to walk is an effort. She's a little wobbly and weak. In addition, the Vincristine causes her bones to hurt so we are very conscious of all Sylvie's movements. Dr. Steele suggested we give her Tylenol with Codeine at least 1x daily simply because there's no way Sylvie will not have some discomfort. When Sylvie was walking all of ten steps back to the couch after her late night painting session, she exclaimed "IT HURTS." Michael said, "Your legs?" Sylvie said "YES." I said, "Your stomach." She said "YES." I said "YOUR TONGUE" and she said "YES" again so I don't doubt that something hurts but I"m not sure what exactly.

For my birthday, Michael gave me a necklace that says "With the happiness held in one inch-square heart you can fill the whole space between heaven and earth." I love that he thinks that of me and if I read it each and every day, it forces me to think positively about myself and that I might actually bring happiness to other people, too. It's really lovely.