Haley’s Giggle

After two and a half years of carpenter nail- thick needles, countless blood draws and line flushes, Haley’s mediport is finally out!  After having  quality time with Auntie Lori, Uncle Lenny, Sam, Jonah, and Alex, we arrive at Sloan even before the desk attendants do.  There were two other patients there, also waiting for procedures. But as bad as it is to deny your already thin kid any food or drink for the 8 hours prior, this is one place that being the youngest matters most: because the kids are fasting, usually the youngest ones go first. Had there been a 1 year old, he or she would have gone first, pushing back Haley. At that time, the playroom wasn’t open, so promised Haley as soon as she was done with the doctors, we could play for as long as she wants.  And aftter two hours, and successful procedure, the first thing Haley wanted to do was ride her favorite green tractor in the playroom. Problem is that the anesthesia didn’t wear off yet, so her ability to stay on the tractor, let alone drive, or even keeping up her own head, but i was not going to deny her the pleasure of the sloan playroom.  And even when an improv group ran a session in the playroom for the other kids, still woozy from the anesthesia,  Haley couldn’t resist trying to twirl across the make-shift like a ballerina along with the other kids.  That playroom was the perfect antidote for what she went through.  I forgot that without the mediport, finding a vein for an IV always proved difficult, and this trip brought that all back into sharp focus.

But despite future sad interactions with the phlebotomist, and although she’s in a lot of pain right now (they reopen the first incision when they inserted the mediport, so it’s often through scar tissue), and more so since she’s allergic to a lot of painkillers, it is a happy day. No more mediport means the doctors are confident in her success thus far.  No more mediport means no more rushing to hospital anytime she has a fever over 99.5.  No more mediport means one less artificial orifice. No more mediport means no foreseen ongoing medication. It’s most definitely a happy day.

Hope you enjoy the latest photos (most are in the “long climb out”) album. Have a look!

Dear everyone:

Hello! Sorry i’ve been away, but 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 says, if all goes well, it should come out this 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. and for me, it wasn’t even harder. i didn’t want to eat anything. i mean, 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. and i’ve stayed 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 hooray! 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). I mentioned in an earlier bog that I 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, I’m up on my 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 i 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.