Pink Party

The PICU department, 2nd floor surgery wing is ORANGE. Just like PedOnc is YELLOW. The Hughes family rolls PINK however, so Sylvie's bed is adorned with her pink blanket, backup Princess blanket, pink Princess pillowcase from Ann, about 10 assorted girly coloring and sticker books, loose sparkly stickers, Princess purse filled with beaded jewelry and lollipops. It's our own Pink Party. Not to compare to the Pink Party that my sorority had for use fledling pledges back in 1990 in which they gave us pink nightshirts emblazoned with baby blue Pi Beta Phi Greek letters, plied us with cookies & brownies in the middle of the night, sang songs and made pyramid formations. Somewhere in Vermont are photographs that document this rite of passage. Polina reminded me today that our 20 year high school reunions are next year. As if.

Michael slept at the hospital with Sylvie last night so I could run home and take care of boring house stuff, get some sleep and practice yoga early this morning.
Dr. Alexander stopped in early and said to Michael that children's recovery from major surgery is truly remarkable. He said that if we, as adults, had our livers resected, we would still be intubated and unconscious. On that note, he said Sylvie was doing great and then on the spot, Dr. Alexander, Michael and the nurse removed the NG tube from Sylvie's nose and her catheter. That being said, Sylvie's in incredible pain. The incision line looks like either a bad boating accident, a waterskiing mishap or shark attack. You can't help but do a double-take. It's only 2 days old. I'm sure it will get much MUCH better! As much as I want to take a picture of it, I feel like Sylvie as an adult would severely dislike me for it. My parents took a LOT of pictures of me when I had my spine surgery as a kid and I remember being a little irritated by it although much to their credit, they did not share the photos with anyone and just thought I might like looking at the images someday. So, when I raid my childhood bedroom cabinets while Sylvie plays in their family room, I can look back at photos circa 1987 of "me with grandparents," "first time standing since surgery," "incision and surgical tape," "me and doctors William Montgomery III, Serena Hu" and so forth. I'm not sure Sylvie needs a photographic reminder. In fact, I think she needs the opposite. I am hoping that she merely remembers how nice everyone is, all the presents she's received, watching movies in bed and eating cheese blintzes.

My mom came early to hang out for the day which was very helpful so that Michael and I could run over to our CSA garden site and mulch. Michael just got a great book about square-foot gardening that should exponentially improve our skills this season. Then Catherine, Polina and Dina came by for a visit.

Part of Sylvie's recovery includes sitting on our lap or in a chair 2x daily. I don't know who is more fearful, us or Sylvie.

She just missed Harvey the therapy dog. He's a Neufoundland and is easily 200 pounds. I think he's the biggest dog I've seen in my life. I wonder what type of car his owner drives and if Harvey has a ramp to climb into it. I wish my dad was here to see the big hairy beast. Harvey is "not allowed" in Pediatric Oncology which bums me out.

Sylvie's temperature has been creeping up to 99, 100 all day. It goes without saying that I REALLY hope she does not develop any kind of fever. If she continues to improve and there's room, she might go upstairs to PedOnc tomorrow afternoon. Dr. Diamond and Dr. Appel dropped by today to say hi and also remark on Sylvie's great progress.

Sylvie is insanely hungry. Polina brought delish cupcakes from the Magnolia Bakery but I had to ask her not to even say the word "CUPCAKE" in front of Sylvie. Sylvie's allowed to eat and drink clear things which is quite challenging because she doesn't really drink juice or eat Jell-O. I got her to drink an organic banana juice while dodging her repeated requests for "Mommy drink" which is Bolthouse Farms Chai Protein drink--definitely off limits. I tried to get her to play with the green Jell-O but then she tried to feed it to me and all I could think of was a steaming cauldron of animal carcasses being boiled down into gelatin and then reconstituted with green food dye and corn syrup. But being a good sport, I let her feed me a spoonful and instantly made myself sick to my stomach! Jell-O, veal and foi gras would definitely top my do-not-eat list.

I'm going to call my parent's rabbi tomorrow to see if he can drop by next week or Michael and I will go to Wayne. He's visited Sylvie twice before, both times being the first two times I had left her bedside back in the Winter. (Can you believe it's almost summer???). Anyway, back then, I still harbored a lot of ANGER and I didn't want to take it out on him. But, I think he's very wise and a really good guy, so I'm ready to ask him all my questions about G_d punishing small children, Judiasm not being a 'punishing' faith, and the whole praying to the source of her illness thing. I know, these are BIG issues that have been weighing on my mind since February compounded by my being equally scientific and therefore not wanting to discredit modern medicine and science for treating and curing Sylvie. We'll see what he has to say about that! I'm sure he will say something that had never occurred to Michael or myself, which we welcome wholeheartedly.

Tomorrow, a reporter and photographer from The Bergen Record are going to the final training run for Strides For Sylvie at the Duckpond. I'm thrilled that Strides for Sylvie is getting great media coverage, more importantly Tomorrows Children's Fund. The t-shirts are in and look great!
I can't upload photos while using the hospital Wi-Fi but will try to take pictures and upload tomorrow. These sizes are available:
Infant 12 mos. t-shirts
Toddler 4 t-shirts
Womens S, M (Small is very small! Like youth L)
Mens M, L, XL