A Scare-free Halloween?

Fall is here, and everything around the house with two young girls is about pumpkins, cupcakes and costumes. The skeleton on the door has a bow in (her?) hair, and plans for turning the little path in our yard into a haunted stroll are well under way. Things are more calm than they have in a long, long time. I believe I had forgotten what calm was like.

Zoe has continued to grow up: she runs, she jumps, she howls, she colors, she tries to do everything her sister does, and she never stops moving until she collapses (or we do). And, as she has grown we’ve continued to make steady progress with her health.

In the past two months we’ve discontinued her Prednisolone and her Septra, two of her worst remaining meds for very different reasons. The Septra because it makes her highly sun-sensitive and rashes continue to be a battle for us, and Prednisolone because it affects her natural growth rate, moods and weight. It was a tremendous relief to cut first one, then with no adverse effects becoming obvious, the other.

There have been struggles, nevertheless, to remind us that we have to stay vigilant with her. She has had a couple of outbreaks of MRSA, something that seems to come up now and then, and she has had rashes. First it was the sun sensitivity rashes, then sniffly nose dripping on the face rashes, then something-in-the-fall-air rashes, with a smattering of not-sure-why rashes. So far though, nothing approaching our big scare over the summer that forced her back on to the steroid, and nothing we have been unable to treat with her bevy of creams and ointments.

Zoe has begun school, and that has been a big adventure for her. We’ve kept her out several times when other kids have serious symptoms or when she is not completely healthy, but she’s gotten to attend enough to fall in love with it. She sees Maya at the door getting ready in the morning and she runs off, grabs her ladybug backpack, and charges out the door to wait by the car to be loaded in, howling and giggling all the way. This routine took a matter of days to perfect, and we’re thrilled that she has taken to it. We had some concerns, given her closeness with her Mom this last year, that she might have separation anxiety. Not this one. In the classroom door and ‘bye bye Mommy’ she goes.

The other milestone we’ve seen of late is Zoe’s first vaccination. Due to her suppressed immune system, she’s been unable to receive the typical doses children her age receive, and instead has been protected by her medications. She got her flu shot a couple of weeks ago though, and so far so good.

I have been told by several people in several ways, “these kids are amazing”, over the past 1.5 years, referring to the transplant kids, and it couldn’t be more true. Zoe sat and watched the nurse give her the shot, and barely budged — no crying, no resisting –just curiosity. As I watched her I had a little action movie script writing itself in my head:

“What’s that thing, some sort of needle? pfft,” Zoe says, pretty eyes laughing at the thought, “I’ve seen worse lady.  Bring it on.”



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