Haley’s Giggle

Timing is everything. Just as Haley’s allergy case gained traction, in comes a new immunologist/allergist who has actual experience with allergies in transplant patients. And while he said that allergic reactions among bone marrow transplant patients is uncommon, he was knowledgeable (and humble) enough to realize that there could be moe to this story.

Insightful Immunologist/Allergist said that they’re not even sure the level of reaction that Haley had. This is because there is no adequate “zero” of eosiniphils against which ot measure the level Haley has in her body. And while it is a definite reaction, there could be yet another reaction going on. Time will tell alot, it seems, and in the meantime, he was pleased to know that Haley was not put on an elimination diet (the one suggested by the gastroenterologist), as it often delays eating even more and is often not necessary. We are testing for soy– Haley is on that alot these days, and it would be a good idea to make sure it’s not adding to the problem.

Heartful Hemotologist is still on top of everything (was actually the one to bring Insightful Allergist onboard), and Haley is in the best hands possible.

The feeding tube has been performing fair, at best. Sometimes it works, other times, for now reason, the alarm goes off, and I can’t figure out what’s wrong. It doesn’t seem to happen logically or consistently enough to suggest a malfunction in the machine. As I’ve come to learn with all of Haley’s gadgetry, it’s often a kink somewhere in her line, as in conspicuous as that kink may be.

Handling the feeding tube is heart-wrenching, as Haley seems to be in incredible pain still when I rotate it.  I try to sing “the sun will come out tomorrow,” though now she simpply responds, “please no song, mommy,” so I’m not sure the singing works anymore for her.

On a great note, Haley is up to 10 steps on her own. Progress toward independence is marked by her increasing need to be held. Pretty normal, as I recall.

Oh yeah, one thought about soy ice cream, which if translanted in the beautiful Spanish, is “I am ice cream.” To which I say, no, sir, you are not. You are soy churned to the texture of ice cream. You are and will always taste like soy, no matter what “flavorings” you hide behind. Shame on you.

All our love to Dave, fighting the good fight. And to Shoshanna, mommy of the latest CAMT infant patient.  You can’t get better than our beloved Dr. B.

The results are in… Of the things she was tested for, it appears that Haley is alleric to all things cow. This means no dairy anything. No ice cream, milk, cheese, ice cream, yogurt, chocolate, ice cream… sigh. She also can’t eat meat– no hot dogs, hambuergers, did I mention she can’t have ice cream? The good news is that she will be drastically minimizing her carbon footprint. Pretty cool for a two year-old. I had laready taken her off of all thngs dairy and she doesn’t really eat meat, and so far, not much change in appetite, though I’m sure these things take time.

The tube feedings are going better, though it’s clear she hates them, and HATES when you clean the site or rotate the bar that secures the tube.  I know it’s for her own good, but it’s always tough to hear he cry that hard.

I am selling the air filters finally, a wonderful sign of how far she’s come!

We have more doctors appointments coming up, so stay tuned…

That’s right! Haley took four steps on her own!!!! a brilliant triumph. they don’t give first place awards out for any of this, but if ever you needed to put money down on anything, it’s this chickie. And, to quote Haley after the four steps… weeeeeee!