P.Y.T.

According to Zoe's oncologist at SCCA, "she's ahead of the curve" as far as how well she's doing at this point past her transplant. She still seems to have no sign of chronic GVHD showing up--especially remarkable given that she had a peripheral blood stem cell transplant (which result in the highest rate of GVHD occurrence).

Our appointment--a monthly check-in--was three Tuesdays ago (see, my timeliness is definitely slipping) at SCCA.

It was so good to see the jaw drop of the PA Natalie when she walked in and saw Zoe for the first time since halfway through Zoe's hospital stay. Last Natalie had seen was Zoe with a distended abdomen, a refractory platelet problem, acute skin GVHD, and a swollen head. To say that Zoe was an altogether new baby in Natalie's eyes is an understatement; watching Natalie's face full of wonder as she gave a boisterous Zoe her exam was potent medicine for Jeff and I.

I guess we can really believe that we have a Wonder Baby.

As well as she is doing, Dr. Carpenter (the oncologist) declared that he didn't want to shake anything up by changing her meds. He did say that she's well enough to stretch her next check-in out to two months; he said he'd see about the appropriateness of backing her off the steroids then.

According to Dr. Carpenter, the steroids are at a minimal dose as it is. A good indicator of this is the fact that Zoe does not really have that steroidal puffiness that people get when they are on a larger dose. Certainly she is chunky, probably chunkier than she would be if she weren't on the steroids, but she doesn't have the jowls and the abdomen of people on higher doses.

That was good to hear.

We've been slowly introducing Zoe's gut to the concept of "bolus feeds" which is where we give her a "large" dose (70ml) of her formula and give her a break from her continuous feeds for an hour and a half afterward. The idea is to eventually get her able to take 120mls of formula four times throughout the day. At the point that this is possible, Zoe will not be needing to be on a continuous feed drip 24hrs a day.

Definitely a worthy thing to work towards, but until we get there this new regimen has us fiddling with either meds or a formula bolus every two hours from 8 am to 8pm (with another med push at midnight).

I'm used to it by now. On my days with Zoe I don't get out much since going anywhere means prepping for at least an hour (and whoops, gotta get another med push in--and, there goes her diaper!).

Jeff and I are nursing machines.

And hopefully soon we will be well toned (let alone honed) nursing machines. Jeff ordered a workout DVD series, advertised on late night infomercials, known as P90X. We have been doing push ups and chin ups and crazy-difficult exercises for the last two weeks that have made us extremely sore.

We figure, we're already exhausted--why not be exhausted for physical reasons? I don't think I've ever exercised at this intensity in my lifetime--but talk to me in a few more weeks; two weeks ain't long enough to brag about...

Here are a couple pics of Zoe working with her PT Sarah--who is helping Zoe become comfortable with putting weight on her feet.




Check YouTube in the next couple days to see some videos of Zoe working with her PT and life skills educator...