Haley’s Giggle

Bacon going strong.  Haley seems to enjoy, though not gaining much on it. Will be going back to the feeding pumpon a constant basis. Was really hoping her illness actually would swing her to the other side of the pendulum.  As Heartful Hematologist  warned, it will likelybe just catch-up eating, and she’ll resume to what she has been doing.  Her digestive tract is still crazy, not sure what is going on. 

First time that hospital in New York has taken so long to get back to us regarding her appointment. There’s lots to do up there, but we haven’t been up since december time.

Walking is still a struggle, but goodness, what a great attitude.

The other night, while putting the girls to sleep, Anna and Haley had an hour-long giggle fit.  My first thought was as a mother obeying the words of the baby whisperer, which was to separate the two and get them to calm down enough to go to sleep in a timely fashion. My second thought was as a mother of kids who’ve not always had the luxury of laughter.  I envisioned those laughing molecules working away the grime of illness, much like the scrubbing bubbles commercial. In the end, and thank goodnness, the second and much logical thought prevailed.  Life cannot be controlled, and neither should laughter. 

It’s almost March madness, which usually a month of just basketball one game after another. This year will be a double month of never-ending excitement, as we gear up to meet Haley’s bone marrow donor for the first time.  Stay tuned!

Bacon has been dispensed liberally in the matzoball soup. Peanut butter has been introduced slowly. The effects, particularly any long term ones,  are still too soon to tell, but signs point to a positive association with food. At least some of time, anyway.  We go up to New York soon for a full blown checkup and CT scan, so we can get an accuate read of where she’s at.  The rest — her rashes, general eating habits, and walking remain the same.

On the walking front, our lovely PT just informed us that she can no longer do “home” visits. The company is trying to replace the PT, but we may have to go to Children’s for a while. Not that the PT department isn’t top notch, it’s just that it’s one of the only parts of Haley’s rehabilitation that she doesn’t have to do in a hospital setting. 

The two-year mark of Haley’s transplant approaches, as does the time when Haley can meet her life saver. I’ve pictured the person over and over in my mind, man or woman, teenager or retiree, sportsperson or litarary lover. The only thing known is that the person is from Europe, so a trip across the pond will likely be in haley’s near future, providing good bacon matzoball soup.

Oh wait, that’s Haley.

What is it about bacon and kids who don’t eat?  Whatever it is, the smell is everywhere on Haley like a perfume. 

Yesterday was the first time she’s eaten more than 1000 calories on her own.  While heartful hematologist warns that this could be just “makeup” eating, since she literally didn’t eat last week, I’m excited that she’s even able to eat that much. And I’m ceratinly not wanting to give her any feeding tube feeds until there’s a lag.  I’m hoping this “hunger”, whatever the reason is, will get her to try more foods, like peanut butter, eggs, fish, even bacon on it’s own (i.e. sans matzoballs).  Like all stimulus packages, only time will tell its worth.

Haley still manages to giggle her way through it all (except for the blood draw).  I wonder what she’d be like if none of this happened. Would she be as giggly without her troubles? or did this who experience make her grab the giggles whenever she can, knowing sometimes there’s not much to giggle about?  What makes us who we are? Do we define our experiences, or do they define us? I guess the answer (at least the diplomatic one) is combination of both. But parents, if you are faced with the job of seeing your kid(s) through something big or small, make sure they know there’s a choice.