Monday, January 25, 2010

Resolution Stuff Continued

You can see my previous Resolution ramblings here. I considered just editing that post, but decided why not do a whole new post. Oh the creativity!

Okay, first I wanted to mention that 2009 was supposed to be my Year To Get Organized!!! Well, I tried hard and made progress (see my organizing tag in the sidebar), but I get such small bursts of time, it will be more like a Decade or Century To Get Organized. So this year I will continue on that journey. But, I would also like to add a little decorating this year. I threw up some art on my kitchen walls after Xmas (hopefully I'll post about that soon) and hubby did a great job hanging up our backlog of children's portraits on another wall, and it just makes everything perkier, happier, more of a home.

I am also trying to add two new (tiny) habits as this new year begins, inspired by all the new-year-posts around blogland. I don't know, they go against my lazy tendencies, I'm not sure how either will get off the ground, but here goes:

(1) make my bed every day
(2) wash the high chair tray after each meal (rather than before the next one as is my current habit)

I thought (1) would be a good model for L, who should start making his bed as a chore soon. Plus that's what normal people do. And then we don't have to remake the whole bed every few nights when the sheets and blankets have fallen completely off the bed and it's 11pm and we're exhausted. And (2) is just logical--wash it immediately and food doesn't stick and the tray is always ready if I need it in a hurry.

Finally, I'm not loving my word of the year: aspire. It's vague and ultimately uninspiring. I'm now thinking about the word grace. I need to give myself grace, extend grace to others, ask for and rejoice in God's grace, etc. So I'll be trying that word on for size for awhile.

Thursday, January 21, 2010

TILT--Glee Soundtracks

The latest things I'm loving are the "Glee" soundtracks. I asked for the CDs for Christmas (volumes 1 and 2), got 'em both and they are my go-to music right now. (Now if only I could get my 4-year-old to let us listen to something other than Christmas music in the car!) In fact, I've just been listening to volume 2 while folding my huge pile of laundry. And now I'm listening to vol. 1 while I type this.
I love these kids. Lea Michele (Rachel) was born for Broadway (and I believe she's spent time there already); Amber Riley (Mercedes) could give Beyonce a run for the money; Chris Colfer (Kurt) belting the high notes in "Defying Gravity,"* I love you! Some of the songs are old favorties of mine like "Imagine" and "True Colors." Others I'd never heard of the original but I love the Glee version like "Take a Bow" or my new fave "Bust Your Windows." I even like their cover of "Lean of Me"--I have always hated (gasp!) the version that was a hit when I was in junior high (don't strain yourself, I'm 35).
Confession time: I love to sing and was in choir the bulk of my life (we're talking 7th grade through first year of law school, oh yeah baby, a capella in law school, I was one cool cat) so I totally love choral arrangements, harmony, falsetto--this is my thang.
Other favorites:
Don't Stop Believin'
Somebody to Love
Keep Holding On
Don't Rain on my Parade
All this is not to say I love every song, there are several I skip, but these CDs are tiding me over till the show returns in a few months. (April can't come soon enough!)
For more things people love, head over to Diaper Diaries.

Tuesday, January 19, 2010

Good News and Bad News

Went to L's GI today. Good news: all three poop cards tested negative. Basically, he's been eating whatever, including wheat, chocolate, lollipops, so that's great. Wondering if the underlying condition is gone, she wants to do another endoscopy. Woopdedoo, gotta love putting your preschooler under anesthesia. Also, if the EE has cleared up, that will confirm that L's refusal to eat is behavioral rather than physical. I think we already suspect that, but nevertheless, it will be good to check on his esophagus and the number of eosinophils in an endoscopy.

If the endoscopy is clear, she thinks we might need to go to Wisconsin (!) for two weeks (!) for intensive feeding therapy. :-o Yeah, on whose dime, cuz that will surely cost an arm and a leg. Specifically, $2500 deductible for the medical stuff and another $2500 or so for travel (air and hotel). Makes me wonder if we're better off continuing the local therapy that is $2500 deductible followed by 80/20 coverage.

She also wants to repeat the swallow clinic we did almost two years ago. This also evaluates the behavioral/developmental aspects. Another woopdedoo, that's a day-long event at Children's Hospital.

Usually, I leave these appointments feeling refreshed--we're not along, we're on the right track, at least he's healthy, and so on. Today, not only am I daunted by the medical stuff ahead, but I'm feeling abandoned on the physical side and being pushed toward behavioral. Not to mention, I want to blame them for causing his fear of food and reliance on formula. But of course, that's not their fault, and the formula saved his life and sustains him to this day. How the heck did we get here??!!

Yet she did say we aren't alone, this often happens that kids who were avoiding foods because of EE have feeding issues and need these interventions. And she totally empathised with our billing problem and the exorbitant cost of therapies from her personal experience. I had no idea her son is in therapies and wouldn't have imagined she doesn't have better coverage when dealing with her own hospital!!!

So endoscopy and swallow clinic ahead. And L may or may not have outgrown EE. And we need to grow a money tree in our backyard.

Edited to add: When I told hubby the above, he quickly figured out we can't afford the endoscopy. Between the deductible and 20%, it would be about $3300 out of pocket!!! On the other hand, had she thought of this at our last appointment in October, he could have had the endoscopy before the end of the year and it would've only cost us the 20% (because the feeding therapy fiasco had fulfilled our deductible). Poop! So we have to figure out if and/or when we can have his endoscopy.

Monday, January 18, 2010

Pity Party

I feel like crying. We see L's gastroenterologist tomorrow and so it's like all our troubles are in bold face tonight as I think about what to talk about with her tomorrow. He doesn't eat! Anything! Ever! It's so frustrating. Former favorite foods, we beg him to take just a couple bites. It's this grand ordeal, we have to ask him constantly "What's your next bite gonna be?"; we will feed him ourselves (he is four-and-a-half for goodness sake), this morning I was sticking blobs of scrambled eggs in his mouth with my fingers, we routinely stick a banana in his mouth. This is absurd! But if I were to put an Eggo waffle on his plate, he'd probably eat the whole thing. He loves bread products but he's allergic to wheat and when I buy the wheat-free equivalent he thinks it tastes funny. Out of desperation, we just let him eat whatever he wanted for about a week, including wheat products, but then he said his tummy hurt and we're like oops, so we stopped.

As a refresher, L doesn't get hives or other histamine allergic reactions. Instead, with the EE, his white blood cells attack his esophagus causing irritation and bleeding. But it's been so long since his poop has tested positive for blood, we're (that's us and his doctors) wondering if he's either outgrown his allergies or even the underlying condition--which is why we were willing to let him eat wheat for a week.

So once he said his tummy hurt, we stopped all wheat and made a hemoccult card of his poop. (We have three poop cards to take to the GI tomorrow, though none are an official food trial--because he will not eat any of the new foods we want him to try.)

So I'm frustrated that L isn't eating. First, there's the calorie issue. If he drinks all of his bottles, which he typically does, he is 250 calories shy of what he needs to maintain his weight. 250 calories--that's not much, yet I doubt most days he's reaching that. Second, we all want to be expanding his diet and that means food trials. To do a food trial, we have him eat a new food every day for at least a week, then test his poop on a hemoccult/guaiac card. So if he won't try anything new, we can't do a food trial. In the past, we've gone down the list (from the allergist) of the next food he's supposed to try. If he wouldn't eat it plain, we'd puree it and hide it in one of his baby foods. Gross, but it worked. Well, he's too old and smart for that now. So what I've been doing is when he is willing to try a new food (as happened with mandarin oranges last summer), I turn that into a trial--mandarin oranges for a week, then test his poop. Now hubby and I are constantly putting anything and everything on his plate hoping something will click and he'll try it, like it, and we can do a trial. But one night he'll be willing to try a pinto bean, and the niext night he won't touch it. It's been going on like this for months. We have the most success with fruits, but right now we are desperate to find proteins he'll eat, because without proteins, he will never get off the formula.

We tried feeding therapy this fall and it was a financial/insurance disaster that I won't detail here. Long story short, we only got 3 sessions (that we'll be paying off for the next century). She helped us getting L sipping his Neocate (that's another long story for another day)--we're hoping to build on that toward getting him off the bottle, but we see now that will be a very long road. But she didn't have enough time to "break him" (her words) so he'd be willing to try more foods. So we're nowhere on that, though we'd like to find another feeding therapist that's cheaper, but we know from looking into this before that few feeding therapists do what we need.

So that's where we are and what I'm thinking about tonight.

Wednesday, January 13, 2010

Resolution Post

It's that time of year again, everybody's thinking about Resolutions. Well, all of mine last year failed miserably, so I've only got a couple small aspirations this year.

1) I am going to try to be friendlier. I think I'm a pretty kind and caring friend, but I tend not to be friendly to strangers, acquaintances, fellow preschool moms, whatever. I'm not rude or anything, just introverted and shy. So I'm going to push myself to be more outgoing and hopefully I'll start to notice moments where I could be more friendly and I'll go that extra mile.

2) This past year I was horrendous about thank-you-notes. I got an entire year behind! So I'm going to try very hard to be prompt with thank-yous so I don't get behind and thus overwhelmed. (Not off to a great start, I've yet to write a single Christmas note.)

3) I want to try to figure out a way to get back to church. It's very hard with two kids and there are various "issues" with the churches around here, but number one we just have to make it a priority again--we got out of the habit and we need to fix this!!!

Meanwhile, inspired by Tip Junkie, I've been thinking about a "word of the year" and think I've finally decided on ASPIRE. I was thinking about goals like: do better, try your best, make better choices, be deliberate with my time, work with purpose, be a better wife, be a better mom. S0 I think "aspire" sums up this goal to try to do better and be better in 2010. There you have it, Happy New Year!