Haley’s Giggle

It’s always hard to look at Haley and think that she’s still sick. She is so effervescent and energetic, that you wouldn’t know she barely eats. Today, I got her to put the marshmallow in the mouth. Of course she spit it out, but it was the first time it touched her tongue. We continue to struggle with her eating and stomach issues. She hasn’t gained any weight, and has grown very little height-wise to get her on the charts. The doctor on monday actually suggested bacon. yes. bacon. not the veggie kind (she’s already tried that anyway). Bacon apparently is a choice food for post-transplant patients, and I’m willing to try anything at this point. We’re going to have to figure out how to make it without un-koshering the ktichen. But I’m sure– if she’ll eat it, we’ll find a way.

Haley is now officially off soy (for those who are keeping tabs, that’s milk, beef, and soy). Since the switch (which now includes making a fresh batch of infant formula every night), Haley went the first 24 hours without a loose diaper, and there was hope that all it’s been is a little allergy to soy. But of course her bad stomach came back this morning. Last week, she was seen by 3 clinic doctors– The empathetic allergist/immunologist, heartful Hematologist, congenial gastroenterologist– plus a nutritionist and her physical therapist.  There are still no direct answers. The best guess so far is that perhaps the allergy is non-IgE mediated, which basically it won’t really show up on another endoscopy/colonoscopy, which is the next step if things don’t improve soon.

This week is the big trip up to Sloan.  That’s when they do a solid day’s worth of testing– EKG, EEG, hearing, eye, and of course all the bloodwork in the world to make sure she is fully fit to handle any medication and prophylaxes that will come down her path.  She also will be tested for protein and vitamin absorption, to make sure she’s getting everything she needs.

As for her walking, it’s well underway. She wobbles alot, and she doesn’t yet have a full-fledged gait just yet, but she’s on her feet. But more than that, she’s gaining confidence inher physical abilities. She’s even discovered a new activity…

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We’re trying to get her to use her leg muscles to kick, so we startd off with an inflatable. Still, her muscles and balance aren’t strong enough. But she’s so cute trying!

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Throughout everything– even a 5 hour clinic day, she couldn’t be a happier more pleasant kid.  During Rosh Hashana (Jewish New Year), please have Haley (and Anna) in your thoughts.

Wishing you all a happy, and very very healthy sweet new year.

After many frustrating nights without a working pump, it’s back up.  Haley’s eating hasn’t changed, but she did a great job walking.  After a great day of apple-picking, animal petting (mostly Molly the very patient retriever), and cheering on Team Holder (special shout out to Andy, Will, and Gary– who were all part of the team riding in memory of Dave), Haley practiced her walking, throwing and kicking the ball, jumping on the trampoline, and of course, swinging from the dining room table. After each little scucess, she asked me for a high-five, and as she gives it says “woohoo!”

All in all, a very very normal wonderful day for Haley (and Anna), capped off by making her watch the goodbye ceremony at Yankee Stadium. 

Tomorrow is a long day filled with clinics, poking, and prodding, so hopefully today will make for it in advance.  Luckily, we get to see Dr.s Guerrera and Sharma, so the time will go fast and be productive.  Her rashed popped up again this weekend, and it will be interesting to see what they have to say about that, being that she’s nowhere near milk or beef.

There are a few new pictures of Haley up, but i promise more … and videos! yes, videos. to come, to come.

Weeeeeeeeeeeeeee says Haley as she just learned how to swing from the dining room table (yes, she’s still small enough to fit).

Weeeeeeeeeeeeeee says Haley as she tries to walk down the hallway to me.

Weeeeeeeeeeeeeee says Haley as she watches the orangutans navigate the wires overhead at the zoo.

Weeeeeeeeeeeeeee says Haley when she jumps on the trampoline or tries to kick a ball.

Weeeeeeeeeeeeeee says Haley when she feeds the ducks.

Weeeeeeeeeeeeeee is her mantra.

Except of course when we’re trying to feed her.

Haley has a new therapist in the mix– a feeding therapist. The best outcome would be for the FT to say, “oh, Haley just has to X and she’ll be eating again.” I have tried everyone’s suggestions. Several times. I have a sneaky feeling that there’s still a physiological component we’re missing.  She continues to have a very bad stomach, regardless of what she eats that day.

As she is gaining strength in her legs, she is gaining confidence in her ability to stand on her own. She also loves the dance parties with Anna and me. She seems to be a Rihanna fan and anything with a slight club beat.

This continues to be a climb out of the hole she was born in. And now she definitely is remembering nurses and lab rooms and doctors’ offices. And doesn’t react well. But through all this– the continual poling and prodding– she’s such a trooper. such a light. such a graceful and giggly kid.  And says weeeeeeeeeeeeeeee alot, to remind me that she hasn’t lost her sense of gratitude for the good things. what a girl.