Gulp

Things I should be doing

1. Cleaning the house in preparation for a houseful of guests
   
2. Grocery shopping for the party tomorrow
3. Preparing food for tomorrow
4. Laundry

Things I should not be doing

1. Blogging
2. Watching Game Show Network
3. Any other form of procrastinating

Tomorrow is the big birthday party, and I'm VERY excited. Sounds like we should have a good turnout (at least 30, is my guess), however tomorrow is supposed to be the coldest day ever in the history of May weather (okay, maybe not that extreme), topping out in the upper 50s. Bah humbug. I figure as long as it's not raining and isn't too windy, maybe some folks can mingle outside. Oh well...not the end of the world, I suppose. But I still have all the shopping, housecleaning, food prep to do. I took today off work to finish everything up, and yet here I am blogging instead of working. I did have to have a nap, to make up for being up ALL NIGHT LONG because of a squirmy, fussy baby and some scary spring weather. But SOON, I promise you, I will get to attacking my monstrous to-do list. At least we went with a grilling-theme, so none of the food should be too hard, and I copped out with a store-bought cake (since I can't bake for 3, let alone 30). God put Hy-Vee bakeries on this earth for a reason, people!!

And just so the title of this post makes some sense, I wanted to update everyone on the swallow study Adele had this week. Unfortunately, it didn't go as well as we hoped. They didn't even ATTEMPT unthickened liquids, as she showed problems with even some of the nectar-consistency stuff. So for those of you interested in the short version, we will have to continue to thicken all liquids (formula for now and any juice, water, cow's milk, soup, etc. when she gets there) to syrup consistency for the next 9-12 MONTHS, the soonest they'll do another swallow study (because of the radiation exposure). Bummer. The good news is that she can have any baby foods above Stage 2 (as they're usually thicker already) and any table foods that are age-appropriate. And since it's very necessary she has the thickeners, we'll get our Letter of Medical Necessity from someone with a bunch of letters after their name, which should be enough to get insurance to cover a portion of the cost of the thickener. AND we'll request the kind that works for breastmilk, so maybe we can finally use that up. I'd like my freezer space back now, please!

For those interested in the long story, or if you just like knowing about anatomy and the "whys" of things, keep reading.

So some of you may wonder "Why thicker? Wouldn't that make her more apt to choke?" Logical question, and one I had to ask the OT myself. They explained it this way: Think of the liquid going into Adele's throat as a waterfall, one that is constantly flowing because the liquid just keeps coming in via bottle or cup, etc.. At the bottom of the waterfall (which is sort of in the middle of the throat, near the Adam's apple) is a dam caused by the natural make-up of the throat/neck bones and muscles. In normal swallowing, the waterfall liquid collects and pools for very smallest amount of time (we're talking miliseconds) before the swallowing reflex kicks in and the liquid is forced into the esophagus. Adele's swallowing reflex is delayed (she gets the lazy reflex gene from me, I'm sure), which means that the liquid collects TOO much (because it's still flowing in, remember) and it actually runs over that "dam". There are only two places the over flow can go: into her esophagus or into her windpipe. Unfortunately, too often it is going into the windpipe, which is what they call penetration. (I could actually SEE this happening during the study. It was pretty hard to miss.) As you can imagine, this is very dangerous. The OT said that when she reviewed the film in slow-mo, she actually saw the liquid touch the vocal cords. The point where penetration becomes aspiration (when the liquid actually goes INTO the lungs) is when it goes past the vocal cords, so Adele missed aspirating by thismuch. Needless to say, that's not a chance we can take. So, basically, by thickening the liquid we slow it down just enough to give her reflex time to catch up and swallow before it overflows.

You may be asking yourself, "Self, is this a muscle tone/strength issue? Is it just a matter of her building up the tone in that area?" Well, not exactly. Since it's a reflex, it's a brain, or more precisely, spinal cord, issue. The neurons just aren't firing fast enough to send the message to swallow sooner. Could it be a lingering side-effect of her prematurity? Possibly. Probably. Is there a chance that reflex will quicken over time? Probably. Possibly. Since she doesn't have any other spinal issues, such as cerebral palsy, it's quite possible she'll just outgrow it. But there's also the possibility that she won't, and this is just the way she's made. That's kind of a yucky thought, but definitely not the end of the world. And since all of her motor skills/development are completely on track, we have no reason to believe this condition should linger. Still, I say, if this is the worst prematurity side-effect we have to deal with, well, then we have it pretty dang easy.

So that's the story. More than you ever wanted to know, probably! On the bright side, Adele was good as gold the whole day, she ate when she needed to, even the nasty barium, didn't fuss or fight--she was her usual charming, smiley self. She's learned to wave, so she was more than happy to show off her new skill to anyone who spoke to her. Such a sweetie! Can't ask for a better kid, that's for sure!

Okay, now for REAL I'm off to clean and prep. Enough fiddling around! I will be sure to take lots of pictures, so look for those next week.