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…

haleyswings_9_08b

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!

haleyswings_9_08a

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.