Haley’s Giggle

Feeding tube: still batting a terrible .100 average. Without fail, the pump breaks down every night. The tube has come out, leaked, you name it. The alarm could not be more shrill. Still, Haley giggles and smiles through it all. She definitely is getting something because her energy level has increased 100%. Her face is more pink, and definitely less sickly pale. She doesn’t want to go to sleep anymore, which used to be her favorite activity.

Eating: So far, the only new thing she’s accepted into her diet is vegan pirate’s booty. I was told that post transplant patients like salty things, which corresponds to Haley’s affinity for pretzels and chips. So I bought vegan bacon strips. Jury is still out. I don’t think she gets what to do with them. I’ve tried to show her, but she just looks at me like I’m crazy.

It’s hard to tell if any of this has translated into height or weight growth; that will come in our next round of clinic visits.

Walking: She’s still in the same spot, so to speak. Though I did just buy her a mini trampoline (there’s a handle on it, which is perfect since she can’t really stand on her own very well yet). She loves it, and if she won’t walk, she certainly will be encouraged to bounce her way through life.

Cognitively, she’s spot on. Not only does she know all of her colors, letters, numbers, and can count to 20, but she helped with some decent NFL fantasy football picks. By this age, Anna was engaged in playdates, part-time daycare, and other pro-social arenas. Logistically, Haley is not really there yet, and so it’s going to be a bit of a challenge to reinstate her into toddler society (yes, she is a toddler now).

And now of course, the dreaded potty training is coming up, and I want to tackle that like I want to sanitize one more toy.

As always, a big hug and lots of love to Dave and gang. If anyone knows how tough the road back to health from a bone marrow transplant is, it’s Haley (and the rest of us).  

Oh, and yes, I owe new pictures. Next time.

We had Haley’s first Gastro clinic visit. It was supposed to be a just a routine check-up to eyeball Haley’s feeding tube, to make sure there are no infenctions and that we’re taking care of it properly. It turned out to be four times as long, loaded with great information — some good, some bad, but to me as always information is power, so it’s all good. 

First of all, that little thing that keep bleeding right over the feeding tube is in fact skin– a minor innocuous skin growth that is aparently quite common with feeding tubes. Of course, that information would have come in handy as i was trying to figure out how to get it off without hurting her (she lways screamed her head off when i tugged at it, and now i know why– it was part of her). Gastro doctor put on some silver nitrate to kill it off, and gave me medicine to put on it on the occassion it comes back. There will also be no “mickey button,” so the long tube that sticks out of her is unfortunately here to stay, at least for a while. This is only bad in that Haley pulls at it, and it sometimes gets caught on things.

Gastro doc and I also talked about a plan to sneak in the calories– i’ve since bought every brand of soy ice cream and yogurt and tons of fruit and soups and will be experimenting with recipes. The more I can slip in her bottle/drink and soups, the better. of course I will be sampling things, and will give a first hand rating of these dairy-free calorie plumpers.

I am told that with feeding tube kids, they don’t wake up hungry, so it’s best not to feed them until a few hours later.  So she’ll be a brunch girl. Also, She is not to “snack” much between meals, so she gets as many calories from her “meals.” Though sometimes her “meal” is cheerios, which IS a snack, but. whatever. We’ll all figure it out.  

Oh yeah, for those looking for water WITH calories, I’ve found it! It’s coconut water and it’s really good and it’s 60 calories instead of zero. It’s at whole foods.

One more thing. Just in case you didn’t know, many prepackaged fish sticks contain milk or butter as one of their ingredients. Who knew.

No progress on the weight, height, (still below the chart on both) or walking (still about half a dozen steps, though she does it now consistently).  She got a bunch of cute new shoes, and that seems to have propelled her desire to walk and say, “cute shoes Haley!”

Updated pictures will be coming soon. Stay tuned!

Love to Dave and the family. We’re all thinking of you.

OK, technically she was fully clothed with shoes on, and had a handful of crayons. So really, probably only half a pound. BUT it’s a gain, and not a loss. So we’re on the right path. Of course, they are also looking for her to grow in height and keep in enough calories during this critical period of cerebral growth. So the marathon has only started. The one thing that is certain Haley has gained is a lot more energy. As giggly and wiggly as she’s always been, she’s even more animated these days, talking a lot more, wanting to “walk” a lot more (by walk, I mean assisted walking), even being more social.  Her appetite hasn’t grown yet, but hopefully she’ll get sick of soy milk and want some real food.

The next stop for Haley is hopefully to shorten the feeding tube, which dangles down past her shirt, getting the run of tests (EKG, EEG, etc), before she gets any vaccines, which she is of course overdue for.

Everyday is a challenge, but she is a bundle of giggle ambition, and we’re all just following her lead.

Haley was particularly excited to see most of her cousins and aunts and uncles and grandparents in the span of a week. And as always, a special thank you to auntie lori, who makes sure hospital visits are as fun as possible.

and as always, to dave, stronger and more determined tha any athlete on the planet. haley can’t wait for you to come home so she can swap war stories with you. we love you very much.