Haley’s Giggle

Dear everyone:

This is Haley. Sorry i’ve been away from the blog. I’ve been busy, but I wanted to catch you all up. I’m happy to say, I’ve been healthy enough to stay away from hospitals. So healthy, that next month my mediport comes out!! And aside from blood tests here and there, and intense physical therapy with fabulous PT Jaye, I’ve been a fairly normal kid. I just realized that, though I’ve only surveyed the bellies of my classmates and family members, I’m likely the only one with a feeding tube.  I kinda like it, but mom and dad say, if all goes well, it should come out within a year. that’s a good thing, i know, since most kids on feeding tubes lose the hunger sensation, urge to eat, want or appetite, and chewing and swallowing mechanisms start atrophying. at first, i didn’t want to eat anything. everything tastes like chicken, and i hate chicken! but i still eat my way through matzo ball soup, and have expanded my nut repertoire from peanut butter to actual peanuts, and even cashews. with the feeding tube, i’m on and stay on the growth chart. and with all my nut-induced energy, i can finally jump and lift one foot off the ground without holding on or falling over. i still have walking issues, and digestive bugs that are bugging me, but i’m getting there!

in honor of my donor this holiday season, along with bestest big sister in the world anna, i donated lots of toys and clothes. and in honor of me being strong enough to help someone less strong, i helped paint a disadvantaged community center.

i hope y’all have wonderful holiday celebrations.and brendan, if you’re reading this, or your parents are reading this to you, i know what you’re going through. literally. but my money’s on you. here’s hoping a new year of strength and giggles to everyone!

love, haley

That is what Haley answers when asked what flowers smell like. In fact, if you ask her what peanut butter smells like, she’ll say chicken, too. This is because Haley has Anosmia (inability to smell), either total or partial. In an earlier blog, we suspected she couldn’t smell, and indeed that is what she was just diagnosed with.  Whether it’s the olfactory nerve itself got damaged or some other part of the process is not clear.

What is clear is that this is a major reason why it’s so hard to stimulate Haley’s appetite. Imagine eating with a cold.  You can taste salt, sour, sweet, bitter, but you cannot detect flavor. You can taste the sugar in ice cream, but not if it’s chocolate or strawberry.  When you chew food, the flavor molecules in the food get released, and as you breathe while you chew, you actually inhale those molecules.  The great thing about this discovery is that to stimulate her appetite, we ahve to think of different means. Visually she might be interested, but then she gets disinterested.  Luckily, we watch a lot of top chef, and know how to make an amuse bouche. Maybe Haley’s every meal is made up of 7 different amuze bouches.  of course, not sure how many ways one can combime  matzo balls soup, peanut butter, cashews, and almond milk.

We have a visit to Sloan Kettering soon, so more updates to come.

As for preschool, she loves it. Ironically, her favorite toy is the medical kit. check out new pictures of haley in school.  the glasses aren’t real.

There aren’t many sights as delightful as a child giddy at the mere thought of something. That was Haley, so excited for her first day of school.  She came fully-equipped: thermos of hot matzo ball soup, cashews, soy-free snacks, almond milk, and tonsand tons of diapers.  the new schedule is school,then physical therapy with the fabulous Jaye. Her day starts and ends with a few spoonfuls of peanut butter, and, too give her even more energy, at the ened of the day so she can’t burn it off, a blast of probiotic smoothie (through the feeding tube, god forbid she should actually want to put it into her mouth).  So far, her favorite thing seems to be playing a pink plastic ruler and singing into the mirror.  The worst part of her day is about an hour into the morning when she realizes she’s not going home any time soon.

Given the fact that she has never been in any type of class or group play environment for more than a half hour, she’s doing extremely well.  Her school so far is being very supportive, and willing to adapt to Haley’s needs.  We will be retesting her allergies, as well as testing her smell capabilities, and, now that we have found an orthopedist, will be going to her soon as well.  Haley wears orthotics now, and that seems to be a doing a great deal of good, so hopefully there will be no procedures in Haley’s future.  Hooray for this amazing girl, who made a small but very important step!