Haley’s Giggle

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.