Day 75 (May 30)
Today was one of the most fascinating post-transplant days. Before the transplant, Haley would only eat green peas and a bit of sweet potato. If you tried to sneak in something sweeter, evern carrots, she would wince and grimace and sometimes spit up. Today she wolfed down and Apple/Blueberry mixture and then later an Apple Dessert mixture. I tried giving her peas, the only thing she used to eat, and she flatly refused. It seemed, in exactly one day, her appetite switched entirely. I have read and heard about people who get transplants who have taken on the appetite and cravings of the donor. It will be interesting to find out later if Haley’s donor has a sweet tooth.
I normall don’t respond to comments, but I wanted to elaborate on something that Dana wrote today. She said that the biggest struggle will be letting my guard down as Haley gets stronger and stronger. It’s already started, Dana, that is not only the struggle within me, but it’s the struggle with anyone who comes in contact with her, who let Haley put her fingers in their mouths.
Kids are inherently messy. And New York is inherently dusty and grimy. Even if I wipe down the apartment everyday, twice a day, there is always something that needs another wipe down. So for now, I still view every spec of dust or dirt as a potential source of infection. I’ve resumed with cleaning with alchohol first, as antibacterial is not antimicrobial. I’ve come to watch the habits of those who come to visit to see where and how I should clean up. I’ve turned everyday household items into cleaning agents. The blue gloves are used as dirty diaper receptacles. toothbrushes become tools for hard to reach corners. paper cups become mini dishwashers for the syringes. I’m telling you, I’m a modern fay Macguver.
Guests today were Aunt Bea and Unle Stan, and Dian.
Funny moment of the day was the realization that in the Cinderella DVD, slecting the “bonus” section will lead to a list of “cinderella” moments in sports, hosted by ESPN Classic.
That funny moment is by far the funniest of all the funny moments of the day. But, if Haley is still a basketball fan, maybe she’ll enjoy it. And as someone with a ferocious sweet tooth, I’m glad Haley is enjoying her new tastes. I promise not to reveal the secrets of $5, 82% cocoa ultra dark chocolate bars until she is much older.
May 31st, 2007 | #
i had a friend in los angeles who had a bone marrow transplant. in recovery she started craving pork rinds and diet coke. now this is a healthy California girl. turns out her donor was a cowboy from Texas. she still eats the stuff now in honor of her lifesaver!
May 31st, 2007 | #
Tansy, that is really funny about Haley’s tastebuds! I’m glad she’s getting some variety now. Hopefully it will make the whole eating process easier and more enjoyable.
I have an idea for you re: how to keep things clean and safe for Haley. I wouldn’t be a bit surprised if you’ve already heard this from the docs, but here it is anyway: background: a good friend of mine had gastric bypass a couple of years ago and his doc suggested that he carry a card with him to give to waiters explaining that he’d recently had gastric bypass and that he’d need to order the kids portion. We actually got a kick out of this idea and he managed without the cards, but I thought it would be a good idea for Haley. I could get the cards made for you if you’d like. They’d be darling, of course, accented with pink and purple- or maybe blue for her eyes- (or whatever you’ve deemed to be Haley’s colors for now) and maybe have a photo of her on them and they’d have MEDICAL INSTRUCTIONS in dealing with Haley. That way, the need to be careful with her would be underscored with each visitor you have. They could say: please remember that Haley recently underwent a transplant. Please wash your hands IMMEDIATELY and then Purell them. Please admire Haley from a safe distance. If you have a cold, please tell my Mom so she can give you a mask (or so you can get the hell out of here)….Children should wash their hands too and should not touch Haley… and so on and so forth… you get the picture. That way, you wouldn’t have to constantly feel like the bossy broken record (which is basically your job, alas) that you’re going to have to be for a year. Plus, I think it might reinforce the rules for people to see it in writing. We could also hang a cute sign from Haley’s stroller letting everyone know that they should keep a safe distance. Because Haley is so young, I don’t think she’d have any emotional issues with these suggestions. Anway, just some ideas. If you send me the instructions, I’ll whip up some cute “business” cards for Haley.
I hope you’re enjoying some sunshine today. I see a little breeze out my window. I hope you have one in NY too! love, Dana
May 31st, 2007 | #
Maybe Haley is simply developing a hearty appetite. That is a great sign! We are curious, though, if the sweet tooth has as its source Haley’s donor. That would be something!
Hope you are able to get lots of sunny outdoor time. This afternoon it poured in Chicago and it may be headed east. When you are stuck in the apartment, do you get to do much else beside clean and watch videos or TV?
Didn’t have a chance to comment, but we loved seeing the platelets and Tcells (or whatever they’re called) going up. We are rooting for those magic “get to go home” numbers. Hope your spirits keep rising with those good numbers and you get your wish to go back home very soon.
May 31st, 2007 | #