She's no slouch

While it seemed clear to me last week that Roxy needed G tube surgery, the surgeon didn't see it that way. He wants to put off making a decision for a couple of months, to see if Roxy's feeding training progresses well. If it looks like she might be able to get all of her nutrition orally within about 6 months or so, then he doesn't want to put her through the surgery for such a short-term gain. Makes sense to me.

Roxanne is, indeed, getting stronger. Up till last week, when I took Roxanne to the grocery store, I put her in either an infant car seat or one of those bucket seats that are attached to the cart. On our last visit, she was able to sit up in the child seat at the front of the cart. She looked so mature! Granted, she got a little slumpy by the end of the trip, but she made it through.

Who are you calling slumpy?

Tests, food and a wedding

I need to blog more often. I read several blogs, and it’s a bummer to see the same page for more than a week.

Roxanne is doing great, and has had some progress on the feeding tube issue. Last week, she had an upper GI study to see if her reflux is still severe enough to require surgery (a nissen fudoplication). The news was pretty good: she still has reflux, but it’s moderate now. Maybe it’s better because she’s stopped having seizures, or because she’s older, I don’t know, I was just glad to hear it.

To review: Roxanne had an ND tube for 4 months. That means she got formula through a tube in her nose to her duodenum, skipping her stomach. In order to do that, she had to be connected to her feeding pump for 20 hours a day. Now that she “passed” her upper GI test, her doctor moved the tube into Roxanne’s stomach, and we’re starting to transition from continuous to bolus feedings. Roxanne has scheduled feeding times, and she’s getting food in her belly for the first time this year. It’s all feels much more normal. I feed her four times per day, and I can carry her around the house when she’s not being fed.

We’re continuing Roxy’s oral feeding training, but without much progress. It’s clear to me that she is going to need G tube surgery while she learns to eat orally again. I have an appointment with the GI surgeon tomorrow to figure out the details, including whether Roxanne needs the nissen or not. I’d rather not, thanks.

To follow up on my last post, here is Roxanne at J & K's wedding. She behaved quite well, but was very talkative during the ceremony, including a few well-timed rasberries that I hope the bride and groom found charming rather than annoying.


Cute, but loud.

Medical-free zone

I’ve been putting off blogging this week. I have some minor updates about Roxanne’s feeding tube/eating situation, but I’m just sick and tired of writing about medical stuff. So instead, the trivial: I bought a highchair.

I went to Babies R Us, picked out a model that looked small enough to fit in our kitchen, and discovered they were sold out. A similar model was available, but the seat cushion was covered in fabric, not vinyl. Um, excuse me? Have you noticed that babies tend to get creative with the placement of their food? Fabric? Is it dry clean only, too?

Anyway, I was able to buy the floor model of the highchair I wanted, at a discount, and BONUS! I didn’t have to put it together. Yeah! One more huge plastic device with snap-together parts would have put me over the edge. (Wait, that sounds a lot more provocative than I meant it to.)



I also bought a dress for Roxy to wear to J & K’s wedding (which is today!) Not one of those scary stiff ones, with all the pouf and scratchy lace, but a nice cotton dress that looks comfy and dressy. Dan says it looks like something I would wear myself.



Roxy looks cute in everything, including her new highchair. Oh yeah, if you look carefully you can see her new teeth on the bottom. The perfect accessory.

Yummy

A couple of days ago, Roxy had her swallow study. As I suspected, she was freaked out about having food/bottles/spoons in her mouth, and gagged whenever we tried to feed her. (I doubt that lacing the formula/food with barium did any good, either, but that’s how the test works.) As a last resort, we used a syringe to squirt a bit of formula into her cheek, and she swallowed it. The good news: she swallowed appropriately without aspiration. The bad news: she doesn’t want anything to do with food or formula, bottle or spoon.

So now I have a lot more questions than answers. How do we convince Roxanne to drink from a bottle and/or eat baby food? When she does get food into her stomach, will she still have reflux, and will she aspirate it? (She didn’t swallow nearly enough during the test to cause reflux, so we don’t know.) Is it time to move her tube from her duodenum to her stomach? How do we transition from continuous feeds (20 hours/day at a slow rate) in her duodenum to bolus feeds (several ounces per feeding, several feedings per day) in her stomach without making her sick? When is it time to give up on the nasal tube and get the g-tube surgery?

I have an appointment next week with Dr. K, Roxanne’s cool pediatrician, to discuss all of the above. I’ll eventually go to see the GI doctor, but I can’t get an appointment until early May, and I’m not willing to wait that long. I’m quite sure the speech therapist/swallow specialist will be involved in figuring all this out, but I don’t know in what capacity. I suspect we’re going to have to let Roxy get hungry to motivate her to eat. Right now, she doesn’t have any association between food and hunger. Things could get ugly.

On a lighter note, I recently got to hang out with my dear friend and former college roommate, KK. She and Roxy were huge fans of each other. After Roxy went to bed, KK and I lounged on the sofa, listened to 80’s music, and reminisced. Isn’t that just the thing with old friends?