Date Night

We did it! We made it more than 24 hours at home!

I think I spent the majority of the day:
at Town & Country pharmacy on Ridgewood Avenue (picking up Zofran, liquid Colace)
at their compounding pharmacy around the corner (picking up 5 syringes of Neupogen)
on the phone with John Herr the head compounding pharmacist
with Mary the home nurse from Valley Hospital
adjusting the ND tube
adminstering medicine through the tube

I gave Sylvie Bactrim 2x, Raspberry flavored Magnesium 4x, Tylenol w/ Codeine 1X, Zofran 1X, Colace 1X and a shot of Neupogen. She was less than thrilled with me.

Tomorrow I have to run back to Town & Country (both of them!) to pick up syringe labels and more Complete in case we run out. I love that we have to appeal Oxford to get them to pay for the Complete since Sylvie hasn't eaten a meal in at least 2 weeks. They don't seem to be swayed by the fact she'd die without it.

Sibel and I gave Sylvie her first real bath in the tub in a month. Sylvie's lost about 2 pounds which doesn't sound like much but it's actually between 5-10% of her weight so she looks really frail. She did not enjoy the bath so we made it quick and had a failed attempt at tooth brushing. I know I'm expecting a lot for our first day home.

Then we picked up Michael from the train and Sylvie looked like a shriveled old man while she sat, head sunken into her neck, in her puffy jacket and oversized hat. When she saw her reflection in the mirror that faces her car seat, she asked me to remove it. That made me sad. As soon as Michael hopped in the back of Blue Car, however, she perked up and became silly Sylvie for the next 15 minutes. We chased Lucky in the yard, played our silly make believe games. I don't know who enjoyed it more, Sylvie or us.

The ladies Chase and Karas dropped by with birthday cake and good cheer. Samantha, who turns 4 next week, said to me, "Sylvie's losing her hair" and I told her that Sylvie's medicine to make her tummy better is making her hair shed but it will all grow back. Sammy replied, "Well, my hair doesn't grow either." Then Sylvie and Samantha colored on the couch like BFFs or sisters. Bella ran around like crazy. She quickly shot up and is so much taller than Sylvie. Then again if you look at the average Hughes family's height and the Chase's, it's pretty obvious!

We had two birthday cakes which Sylvie liked although it was Sammy and Bella who devoured the fudge and chocolate mousse.

Catherine told me that last night when Sammy got home from visiting us, she said, "I'm glad Sylvie is home so I don't have to miss her anymore." I couldn't have said it better.

We were supposed to go out and "celebrate" my birthday but our NYC dinner quickly became dinner locally. My parents were on standby to babysit but after tabulating the meds, the new NG lines, bringing all that crap upstairs and so forth, I freaked myself out from leaving the house.