Tuesday, August 31, 2010

Biker Chicks











Special thanks to Grandma and Granddaddy for the iBert bike seat and to the Magic Helmet Fairy (a.k.a. Emily S.) for Becca's adorable "special hat"!

Monday, August 30, 2010

Potty Training, Take 1

Sooooo...we attempted potty-training boot camp. Okay, we kind of attempted it. Becca was good about telling us when she was peeing or when she had peed, but not when she needed to go. I figured that would take a little time to learn. After one afternoon/evening and one morning, though, Becca was no longer liking sitting on the potty, so we decided that it was time to back off and take a different approach. When Becca decides she doesn't want to do something, it's best not to make it an issue; she redefines stubborn (which, as I've said before, saved her life, but, wow, it can make things difficult!). I think I'm going to try to make the potty fun again by giving her an M&M (great reward for her!) every time she sits on it, and then have some "panty time" while we are home each day. Depending on how that goes, we may try boot camp again in a month or two. I still think that when's she ready, she'll really take to the all-or-nothing approach; she's an all-or-nothing kind of kid. Who knows. We did learn a few lessons this weekend:
  • Consistency is key. Or at least, not being consistent isn't going to get us anywhere. I definitely found myself slacking. I will really need to get a good night's sleep before our next boot camp!
  • The girl can control her body! For example, she went 3 full hours without peeing on the first day. And she didn't poop for nearly 3 days (one day before boot camp), I think because she didn't want to poop in her underwear. (She normally poops everyday, and, trust me, she wasn't clogged up. :) )
  • Queen-size fitted sheets make great slipcovers. Due to my husband's stroke of genius 4 years ago in the Rooms to Go outlet (outside Atlanta - it's amazing!), our den furniture is leather, which makes for easy cleaning, but still...urine on furniture is not ideal. Next time, I think I'll dig out the flannel sheets for even better coverage.
  • Contrary to my assumption, Becca doesn't care if her panties are wet. Oh well.
We gave it a try; we'll keep working on it; and I'll keep you posted!

Sunday, August 29, 2010

Whoa!

Breaking news: Becca just kissed a french fry dipped in barbecue sauce - twice!

This is huge, folks. Huge. Super progress.

After the kisses, she kind of licked the sauce off her mouth and made the funniest expression I've seen in a long time - kind of a what-the-hell-is-this-stuff-in-my-mouth-wait-I-might-like-it look. Wish I had a video camera in my eyes so I could share it with you now. Then she was "a-done" with french fries completely, but still willing to eat "appah" (translation: apple, though the fruit in question is really a peach).

Moral of the story? Despite what the nutritional facts tell you, a little bit of McDonald's does a body good.

p.s. "Whoa!" is now one of Becca's favorite words...as in, "whoa!" I almost slammed my fingers in the door, etc.

Wednesday, August 25, 2010

Wednesday Weigh-In

And on Wednesday, even!

Last week: 8.15 kg (18 pounds), 29 inches
This week: 8.25 kg (18 pounds, 3 ounces), 28.5 inches
Week's change: +100 grams/3 ounces, -0.5 inches (Really, I think the peds office just isn't set up with a good length-measuring tool like the GI or endocrine office has.)
Net change: +550 grams/19 ounces, +/-0 inches

Granulation tissue is still looking gross and not really shrinking, so we'll probably have to get it treated again on Friday after feeding therapy. It looks like a gummy lifesaver around her stoma (a.k.a. her g-tube site). The actual tissue looks like the inside of your mouth. Kind of weird and oozey, but generally covered with gauze and not irritating. Not a big deal, but annoying. It seems to be more stubborn than most granulation tissue...after, it is on Becca.

And how about a bonus photo? My mom snapped this one whilst she was entertaining Becca so that I could sleep in. What a grandma! In this picture, I can clearly see my Uncle Doug, my brother Dave, and Grandma herself. Such a pretty artist!

Tuesday, August 24, 2010

To Pee or Not To Pee (in the Potty)?

Today, I finally found them:
They are apparently the last pack of 2T Elmo panties in the greater Nashville metropolitan area. Okay, maybe not, but I did have to look in 7 different stores to find them, and they were the only Elmo panties (of any size) at Kohl's. Nana Dana found another pack in Ohio, and I've backed up the Elmo supply (our a-game) with a pack of Disney princess panties. (Of course, the 2T's are huge on Becca, but they do seem to stay up on her, which is more than I can say for many of her pants.)

We've got:
an Elmo potty seat,

a Dora potty seat,


a royal potty,

and a Baby Bjorn "Little Potty,"
aka "Bear Potty," and the only one of the bunch that really fits her.
(It's intended for infant potty training and/or travel use.)

And since no trip to the potty is complete without a little reading material, we've got:



(all for sale at www.ittybittybooks.info, of course!), and

because every little fairy needs some potty sound effects.

SuperMom's got some reading material as well:


And, most importantly, I've got a two-year-old daughter who insists on doing everything herself, who takes off her diaper, who knows how to hand Mommy paper and flush the toilet, who can tell me when she is going "pee-pee" and loves to sign "potty" when she's pooping, who can reliably walk to the potty by herself, who can (when she is so inclined!) follow 2-step directions, and who can't stand being wet or dirty. (Hey, we might as well let this sensory processing disorder work for us for a change, right?)

My working plan is to do the three-day potty training boot camp: no diapers, no training pants, no pants at all for three days. Potties scattered throughout the house (hence the multitude of potties). Every 15 minutes without an accident earns an M&M or 2, with trips to the potty at least every 30 minutes. Pee-pee or poop in the potties earns massive celebration and as many M&M's as her tiny hand will hold. Diapers at night, Pull-Ups at nap? Since we don't actually ever get 3 days at home in a row (due to therapy, etc.), we'll have to modify some, but my gut tells me that my headstrong, all-or-nothing kiddo will work best with this kind of method. The questions that remain are 1) whether or not Becca is truly ready (she is on the young side still); and 2) whether or not I can stick to my guns. SuperDad is game for whatever, assuming he still gets to go to work and all. Tentative go-time is next week.

So, what do you think? Am I insane? Can we do this? What potty-training practices do you suggest? What tips or tricks do you have?

Monday, August 23, 2010

On Being a Parsonage Family

Our friend Jessica Miller Kelley (identifiable to UM folks as the editor of Circuit Rider and to BHS friends as Matt Kelley's wife!) writes one of my favorite blogs, called The Parsonage Family. (Matt's been know to write there as well.) Since Jessica is seminary-educated, married to a parish minister, mother to an adorable toddler and generally fabulous, we tend to view life from a similar perch. They are literally a parsonage family right now; that is, they live in the parsonage provided by the church Matt serves. Over at Itty Bitty Hill, we are a figurative parsonage family now; that is, we own our own home, but are still the pastor's family...which comes with a pretty unique set of stressors.

In this post, Jessica writes about some recent research about pastors and their families. Some of it is pretty scary stuff. Stuff like the fact that pastors have the second-highest divorce rate of any profession. Some of it is stuff we can't do anything about. And some of it is stuff that I'm glad we're learning now, while we are young (and yes, 30 is YOUNG in church leadership these days!) and can hopefully establish habits now that can keep us healthy (okay, help us get healthy) for years and decades to come. Yes, I said decades. Crazy to think that John and I probably have 40 more years in the ministry...if we last. Wondering why that might be difficult? Scurry on over to Jessica's post and check it out. If you want to see the full list of statistics, check out this article from honoluluadvertiser.com. If you are a pastor, are married to a pastor, are friends with a pastor, have a pastor, once knew a pastor, have ever seen a pastor, were raised by a pastor or are raising a pastor, please check it out.

And then, as the articles say, hug your pastor...and his or her family.

Friday, August 20, 2010

"Wednesday" Weigh-In

She hit 18 pounds! Wohoo!

Last week: 8.05 kg (17 pounds, 11 ounces), 28.5 inches (see what I mean about height measurements?)
This week: 8.15 kg (18 pounds even!), 29 inches
Week's change: +100 grams/5 ounces), +0.5 inches
Net change: +450 grams/16 ounces, +0.5 inches

And that means that she's gained a pound since the tube was place on July 8th, which was 6 weeks ago!

We've had some continued issues with granulation tissue forming around her tube site (click here for the wikipedia entry on granulation tissue) and had it treated for a second time in the surgery clinic today. I'm already seeing improvement, so I'm optimistic that today's silver nitrate treatment will nip it in the bud. It doesn't bother her too much, but it does look pretty gross, kind of like a canker sore forming around the button. Still, a minor complication for a huge pound of weight gain!

Thursday, August 12, 2010

Wednesday Weigh-In + Some Food Talk

I'm an optimistic person (kind of), so I'm going to keep calling these posts "Wednesday..." in hopes that I do actually post some Wednesday. I've got 2 weeks for you, since we left town right after weighing in last week and returned late Tuesday, just in time to catch a good night's sleep before heading back to the doctor for this week's check. John and I went to Chicago for the (amazingly beautiful and fun) wedding of a college friend and stayed an extra couple of nights to celebrate our 5th anniversary (more on that later, I say optimistically!). Added bonus? Becca made it through the entire weekend at Nana Camp (which is marvelously fun for everyone involved - Nana, GG, Becca, and John and me!) without having to go to the emergency room! Nobody even had to call the doctor! Let's hope this week broke the ER streak for good.

But, without further ado, here are the latest stats:

Two weeks ago: 8.05 kg (17 pounds, 11 ounces), 29 inches
Last week: 8.0 kg (17 pounds, 9 ounces), 29 inches(ish)
Week's change: -50 grams/2 ounces, + 0 inches
Net change: +300 grams/10 ounces, + 0.5 inches

Last week: 8.0 kg (17 pounds, 9 ounces), 29 inches(ish)
This week: 8.05 kg (17 pounds, 11 ounces), 28.5 inches (see what I mean about height measurements?)
Week's change: +50 grams/2 ounces), -0.5 inches (riiight)
Net change: +350 grams/12 ounces, -/+0 inches (but I promise you she's taller!)

So we had a week of weight loss, but made it back up this past week. She's still gained so much that at her 4-week surgery follow-up, they had to put a bigger Mic-key button in! She's graduated from a 1.2 cm tube (the length of the actual tube part that goes into her tummy) to a 1.7 cm tube. The new pudge on her tummy was making the old tube too tight and irritating her skin, so the new one gives her a little more (literal) breathing room. The step up is a great sign! The surgeon also signed off on my replacing the button at home if it pops out again, and she's cleared to swim in lakes again, so goodbye ER, hello Grandma and Grandaddy and the boat!

However, we have been having trouble with her keeping all her milk down in the mornings, so I've been playing with her volume. She was getting 400 mL's a night over 10 hours, but she was vomiting close to 2 out of 3 mornings, so I backed down to 350 mL's at the end of last week. No vomiting. Which is nice, and really, when she vomits, she loses way more than the extra 50 mL's she was getting. But with the weight gain lagging, I'm probably going to try to slowly bump her up some more and stop when we hit vomit. 'Cause that's no fun for anyone. We saw the nutritionist last week before our trip, and she insisted on keeping her at the 400 mL's, but, well, she's not the one who has to clean up all the puke! And since Becca had been on the high end of her weight gain goals (50-80 grams a week), I thought it would be okay to dial it back a little. We'll see how this next week goes, when we're not travelling, and then John and I will decide how much we want to push it.

And, yes, I said John and I will decide. We've entered the realm of parent-directed care, which is sometimes a little odd for us. So much of Becca's medical care -- and her basic daily care, such as feeding, exercises, etc -- is prescribed that every now and then I have to remind myself that we're not in the hospital anymore. Yes, the doctors prescribe the formula and the use of the pump, but I'm Becca's mom, and with SuperDad at my side, we are the ones who actually need to be making such decisions. Of course I take the nutritionists' and the doctors' advice into account, but I'm finally learning that when it comes to feeding Becca, there's so much nuance that only daily experience and intuition can really interpret. For example, Becca eats some crazy foods that you may think we would set aside in hopes of establishing the basics. She still won't go anywhere near mac and cheese, but she'll stuff herself silly with olives and feta cheese. And she eats the olives best if they are whole. So I give my two-year-old whole olives and the big chunks of feta cheese (and save the smaller crumbles for myself!).

She's also really taken to Starbursts lately. Every book on childcare would tell you not to give a toddler a Starburst, but if my eating-disorded kid is going to use advanced fine motor skills to open a ziploc bag (I tend to keep a few candies in a bag to take in case I need a little jolt of sugar), take out a Starburst, unwrap it, and then put it in her mouth -- and totally enjoy it -- I'm going to let her do it. Of course I'm going to keep a super-close eye on her while she eats it and not let her wander around with it in her mouth, but if she's enjoying food, I'm not going to stop her. Call DFACS if you want. But now that she's got the tube, I'm really working on enjoying food with her, since the formula meets so many of her nutritional needs. (Okay, you all know I already enjoy food a little too much, but I'm working on helping her enjoy food.) I'm also trying to establish healthy eating patterns, though, so I try to save the Starbursts and the M&M's until after we have at least attempted some real food. And, yes, olives and feta cheese are real food. Oh, and she likes tomatoes, too, and they are called, like everything else round and red, "appas." A-dorable.

I wish I could present you with a picture of a sticky, Starburst-y child, but, alas, I do not have photographic evidence of my neglectful parenting. Perhaps it's for the best. :) I do, however, have further evidence of Becca's adorableness. Here's my little peace baby...and her riDONKculous pink cowgirl boots!


p.s. I have a favor to ask - one of my dear friends is having quite a bit of trouble with her pregnancy. She's just started her second trimester, and it looks like it will be a tough road from here on out, which will hopefully be a good, long time. I'm sure she and her family would appreciate your prayers a great deal! For the sake of her privacy, let's call her...Sally. Sweet, sweet Sally and her itty bitty baby boy. Thanks!

Sunday, August 1, 2010

And Home

We finally got home from the ER at noon on Saturday. Yes, we had to stay for 14 hours to have a 5 minute procedure done. I'm not even exaggerating. I spent most of the night in the crib with Becca until I was finally able to track down a nursing student who was willing to find a cot for me around 2:30 or 3. Insanity, I tell you. And it's not because the ER was crazy-busy. The surgeons just didn't want to put the button back in at night "because of the risks of needing emergency surgery." I have a hunch that the translation of that statement is "because either the attending surgeon or the radiologist refused to come in on a Friday night." Punks. I mean, really, I didn't want to be there, either, but -- hello! -- this is why you are paid hundreds of thousands of dollars a year. I don't know for a fact that this was the issue, but given the experiences some of our friends have had with weekend feeding tube issues, I'm pretty sure that's the case. Especially since, even after the button was finally placed at 7:30 am, we had to wait 1.5 hours to get the x-ray done -- the x-ray that was to check for placement, in case we had perforated her stomach and required emergency surgery -- until the radiologist got around to coming in. Seriously, if it were such an emergency risk, why did we have to wait 90 minutes to make sure she didn't need surgery?

Adding to my frustration is the fact that having to wait until morning meant that Becca didn't get her Friday night feeding, so she went nearly 30 hours with her primary source of nutrition (her formula). (She had some food during the day, but not much. We count on her formula for her nutritional base.) Remember last time she was NPO? And how she had a possible seizure because her blood sugar dropped so low? To 40? I mentioned that to the ER doctors and suggested that she be put on the IV fluids with a higher glucose concentration (the one she ended up on after the seizure) in order to prevent hypoglycemia. They decided not to bump her up and said that they would check her blood sugar throughout the night, but they never put the order in, so her sugars were never checked. When we got home and Becca literally just laid down on the floor, I decided that I needed to check her levels myself. Her blood sugar had dropped to 44, which is dangerously low. I called the pediatrician (and my wonderful pediatrician cousin), bolused her a few ounces of juice, and stuck some cake icing under her tongue, and after 25 minutes, it was back up to 82, which is within normal limits. Needless to say, I'll be more insistent about her tendency towards hypoglycemia when she is made NPO in the future. Oh, and they didn't give her either of the medicines she should have taken Friday night and Saturday morning. Seriously?

There's probably an e-mail to patient affairs in the future. I mean, I'm sure there were much sicker kids in the ER that night, but we had a pretty miserable time, exposed Becca to all kinds of ER germs, missed several doses of medicine, ruined our fun Saturday plans (a birthday party AND a trip to the zoo!), and neglected Becca's nutritional needs to a degree that put her at a very high risk of seizure or other issues...and I still haven't heard a decent reason why we had to wait all night. I'm trying not to make assumptions, but I will be asking some pointed questions.

But, we are home, and after Saturday afternoon naps, Becca and I are our usual chipper selves (meaning, of course, that Becca is chipper and I am at least not mad at the world anymore). And now SuperDad is home from camp, too. (Well, he's still at church right now, but he's in town.) So all is well enough.

p.s. By the end of the stay, I was helping myself at the sticker station in the ER. Thank God for Sesame Street stickers!

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