Wednesday, November 7, 2012

Another test, another head-scratcher...

Millie's swallow study yesterday revealed findings that I was completely unprepared for. Not because they're terrible - we'll make it work one way or another - but because they were really, really unexpected.

Millie doesn't eat solids. We took her in to find out if there is a structural problem preventing her from eating solids.

The result?

She is struggling with liquids.

Actually, she is struggling with fine liquids, medium liquids and big, crunchy cookies. she is aspirating, meaning the foods are going down her airway into her lungs, causing her to choke, cough and gag.

I think the tester lady talked with us about the results for about two full minutes before I finally had to interrupt and ask for clarification.

"Wait," I said, confused and perplexed. "You're saying she's aspirating on liquids?"

Like, as in milk? Which she has been drinking for all 16 months of her life? And I, her so-called mother, hasn't noticed that she's been having difficulties? Mommy fail.

As it turns out, she aspirates on liquids and thicker-yet-still-not-very-thick liquids (called nectar; which isn't really nectar, but is a consistency similar to nectar). The thickest liquid (called honey, again, because of its consistency and not taste) did not cause her any problems. Likewise, she also did not have problems with yogurt or dissolvable foods (like puffs, crackers, etc.) but she did aspirate on the larger, crunchy, textured cookie.

What does this mean?

Well, life gets a bit more complicated (again). We now have to start thickening her liquids until they are the consistency of honey, more or less.

I'm still learning a lot about all this stuff. But it sounds like there are several options. They will require more work and more time, mainly because she likely won't be able to use a bottle anymore and while we've tried to get her on a sippy cup, we just haven't had any progress. During the test, she took it all OK with the itty bitty measuring cup thing they give you when you buy cold medicine. So it will work, but it will take much, much longer to feed her.

Meanwhile, we now have specific goals for her feeding therapies. These will start again Monday. I don't know if we'll up their frequency from once a week, but I'm sure we'll have a longer-than-usual conversation that morning.

Really, other than the Mommy Guilt plaguing me at this moment, we're doing all right with it all. I'm just overwhelmed with information. And questions.

But we'll take it, again, one day at a time. And figure out what works best for her. And us.

Oh, and, no, we were not able to see the neurologist. So I still don't have the genetic/blood work results. I guess we'll save that one for another day.

But I want to end this on a more upbeat note: Millie was a rock star. They wanted her to take the barium straight in a bottle or a cup. Despite resisting it at first, she eventually just got used to it and tried whatever I gave her. She didn't cry or whimper once, during the whole test, when she was sitting upright in a special chair, surrounded by machinery and xray machines.

She was an angel.

I was so proud of her.

I still am.
- Bethany :)

1 comment:

Anonymous said...

Millie's mom was also a RockStar! I was so proud watching you and just as proud seeing that precious baby girl sit in that chair and smile and drink that barium! When you were a little baby and had to drink that barium, you refused totally and they had to stick a tube down your throat...progress! Even though it was a hard day, I loved wrapping my around around the 3 of you. Mom