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FAITH FAMILY ADVENTURE SHORT ANSWERS

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Wednesday, February 25, 2009

Caroline's Breakfast



Just finished feeding Caroline her breakfast. If you ever get to do that... here's how it goes (numbers correspond to objects in the picture; click on the picture to see it bigger):

1. Prevacid (to help with stomach irritating): One 15 mg tablet dissolved in a bit of water [4]; 15 minutes before the rest of her breakfast, you connect her g-tube [2] to the port that was surgically implanted in her stomach wall; then you connect the large syringe [3] to the g-tube and pour the prevacid solution in; you'll need to use a bit more water to get it all in.

4. Water: Caroline gets 9 ounces of free water throughout the day; this is used to flush her tube at the end of each meal; she also gets 8.5 ounces of water mixed with each meal, hence the two water bottles

5. Tegretol (or Carbemazepine; a seizure-control medication): One 100-mg tablet crushed in the mortar and pestle [6].

7. Depakote (another seizure-control medication): three 125-mg capsules filled with tiny granules, called sprinkles; open the capsules and dump the sprinkles into a little cup [8], in which you also put the crushed up tegretol [5]

9. Scale: Turn on the scale and find a measuring cup and spoon [10]; place the cup on the scale and "zero" the scale (press the "on/zero/off" button to make the scale read 0

11. Polycose (carbohydrate additives for Caroline's food): measure in 1 gram of polycose into the measuring cup (using the spoon)

12. KetoCal (Caroline's food; a formula that helps maintain the ketogenic diet, which helps control Caroline's seizures): measure 28 grams of KetoCal into the measuring cup (I usually zero the scale after putting in the polycose)

13. MiraLax (a laxative because ketocal can be a bit constipating): add 1.5 teaspoons of MiraLax to the measuring cup mixture.

Now you're almost ready to feed. Take the water bottle [4] with 8.5 ounces of water and pour it into the measuring cup, mixing it al up until you have a thick milky-looking soup. I usually don't put all 8.5 ounces in--usually more like 7.5 ounces. The remaining water I use to flush the tube after the feeding.

Next, add a bit of the free water to the bottle that used to have 8.5 ounces of water; after adding the water, you should have between three and 5 ounces of water in it (depending on how much you used to mix); these 9 ounces will have to last through four feedings, and you need at least 1.5/2 ounces for flushing each meal; so you have to ration appropriately.

Now you take your measuring cup full of KetoCal mixture, the small cup with the tegretol and the depakote, the water bottle, the g-tube, and the syringe into Caroline's room. You hook the g-tube up to the feeding port in her tummy, connect the syringe, and you're ready to go. First pour in a bit of water and then add the tegretol and depakote; you'll need to add some more water immediately to help the depakote and tegretol not clump up; if they clump (which they are prone to do), they can clog the tube, and that's a pain. Once the medicine is in, you can start pouring in the KetoCal; pour in enough to fill the syringe mostly full, then wait for it to drain most of the way down and add some more. Continue until all the KetoCal is gone; then pour the remaining water into the syringe and let the water run out into her stomach. This will flush the tube and the tube port. When it's all the way in (only a little left in the tube), clamp the tube with the white clamp, remove the tube, and you're done.

Almost. Now you need to wash the measuring cup, tube, syringe, mortar and pestle, and medicine cup. We have a bottle brush and dish soap which work really well to clean the syringe and tube: keep them connected, put some water in the syringe, add some soap, and clean with the bottle brush. This method has allowed our g-tubes to last much longer than they would have otherwise (which is good, cuz they're not terribly cheap).

Tuesday, February 24, 2009

The Promise of Spring

This afternoon a beautiful woman stopped by my office for a minute. We talked briefly inside and then I walked outside with her. The sun shone brightly with a golden light, creating a warm late-winter day--starting to feel like spring. As we stood and talked beneath a leafless tree, the sun casting a network of shadow branches across her hair and face, I gazed at her smiling eyes and was taken back to similar warm late-winter days 10 years ago when we were dating.

Those were bright, exciting days of anticipation--just days before tulips would emerge, weeks before blossoms would burst open, and a month before we would become engaged (right). After a long winter of cold-weather dating activities (before I knew just how much this California girl dislikes the cold), Christine and I were eager to buy into the promises of spring, and we looked for any opportunity to get out in the sun and enjoy the progressively longer days.

Today we remembered together one such day a decade ago when the sun's angle was not too different from what it was today--the light similarly golden, similarly filtered through the bare branches of trees that had not yet leafed out. Lured by the sunlight and the anticipation of warm days to come, we packed a picnic and headed to a park not far from my office to kickstart spring and inaugurate the outdoor season. There we found an unexpectedly chilly evening and a frigid wind, but we huddled together in blankets and sweatshirts and looked across the valley, enjoying the setting sun and each other's companionship.

From where we stood today, we looked toward that park on the side of the mountain and smiled at our youthful spontaneity. Our fingers intertwined and we talked of love and philosophy and Christine's upcoming 5k race. The conversation was as pleasant as the weather, the smiles were as bright as the sun, and the relationship held all the promise of spring.

Monday, February 23, 2009

Wolf Song

A few minutes ago, Lizzy emerged from the bathroom and announced, "Mom, I just made up a new song. It's called the Song of the Wolf Mother." Then she started to sing, "No dear, it's not time to howl..."

Saturday, February 21, 2009

A Step Up the Ladder of Home Improvement Expenses

As fall was coming on, I visited Home Depot one day with a long list of things to buy. On that list was a step ladder. My dad had recently studied my trees with me and given some pruning advice. The trees were now tall enough that I could not prune them standing on a chair. I would need a ladder.

So off I went to Home Depot to get a step ladder. Standing in the ladder aisle, I called my dad for advice. What kind of ladder do I need? Aluminum or fiberglass? How tall do I need it? 6 feet or 8? And should ladders really cost that much? A 6-foot aluminum ladder (which is what my dad recommended) cost $39. That just didn't seem right to me. Realizing I didn't need a ladder just yet--pruning season isn't until late winter/early spring, I decided to postpone the ladder purchase and watch for a sale.

So the months have passed and I've occasionally checked for sales and have looked at other stores. No better deals were forthcoming. So today, now that pruning season is upon us, I decided it was time to bite the bullet and pay $40 for a ladder. So off I went to Home Depot again.

From the garden tools aisle, I called my dad for advice on a long-handled pruner. (I went for the bypass lopper; that's what Dad has.) "Where are you buying a pruner?" my dad asked?

"Home Depot," I replied.

"I'm on my way there right now," he said. "I'll be there in about five minutes."

I mentioned that I was going to get a ladder next and he said he'd meet me in the ladder aisle. We'd have some good male bonding at Home Depot.

Five minutes later, we were standing in front of the ladders studying the aluminum 6-foot ladder I had unfolded in the aisle. It looked decent enough. Had a nice fold-out platform for holding tools or paint buckets. It could support 250 pounds.

"Don't you already have a ladder?" My dad asked. I explained that when I talked to him a few months ago I had decided not to buy the ladder after all, hoping to find a sale on ladders before I needed one. We looked at the price tag: $49. Ouch. My effort to save money had actually cost $10 (decided it wasn't worth waiting longer).

But then came the kicker: "After I talked to you last time," Dad said, "I decided I needed a new stepladder, so I came down and bought one right here... for $39."

Doh.

Lizzy's Sidekick

This afternoon was warm (for February) and the sunny day beckoned Lizzy and her scooter outside. The scooter has been the most popular Christmas present of the year, but due to the weather, it's been an inside present thus far. Lizzy rides it down the hall, through the kitchen, down the ramp into the family room, and back. Back and forth, back and forth. She's had lots of fun scooting around the house, but on a nice day like today, the sidewalk is a more appealing place to ride.

Soon our next door neighbor who is Lizzy's age joined her, and the two scooted up to the garage, where I was working on some things. "Cool blue scooter," I said to Nathan, who quickly clarified that, though it was a cool color, the blue scooter was not his because he couldn't find his scooter. The blue scooter was Nathan's sister's. After a few more comments on the color of his scooter and of Lizzy's pink scooter, Nathan and Lizzy scooted back toward his house. In a minute, Lizzy was rushing in our house to get something and Nathan was going to his house. Unsure what was happening, I went about my business. A while later, Nathan and Lizzy were both coming into our house. Lizzy explained she was getting a notebook and a pencil for Nathan. Having seen the magnifying glass in her pocket, I surmised what was up.

"You going to play spies?" I queried.

"Detectives," Lizzy corrected.

"And this time it's a real case," Nathan informed me.

Lizzy gave the case's official title: "The Case of the Missing Scooter." I wished them luck, and off they went to find Nathan's scooter.

A couple minutes later I went into the garage to get something and overheard Lizzy and Nathan talking on the other side of the van. "...and Eric--" said Lizzy.

"You can cross Jason off the list," said Nathan, referring to his oldest brother, who is a freshman at a nearby university. "Jason hasn't been at our house since I last saw it."

Chuckling, I returned to the kitchen and told Christine they were working on their list of suspects. When I returned to the garage again a few minutes later, I saw the two of them talking to Eric, Nathan's younger brother, who was standing astride his own scooter. On Lizzy's notepad I could see Eric's name crossed out. He must have passed questioning. I asked how the case was going.

"We found some tire tracks going into our garage," said Nathan. Pointing with his foot to the edge of our garage, he continued, "But the tire tracks stopped right here where you go into the garage."

"And we found some dirt tracks, too," chimed in Eric, eager to provide a helpful clue. Lizzy was bent over her notebook, carefully writing something about dirt tracks. Soon they were off to Nathan's garage again, looking for more clues.

Apparently, this effort did not yield the necessary information, for I soon heard our door open again and the three of them came tromping into the kitchen, Eric wheeling his scooter along with him. They needed more detective supplies and headed off into Lizzy's room. As they emerged and headed back out a minute later--armed with Lizzy's walkie talkies and third notebook and pencil (this one for Eric)--Nathan paused to provide color commentary: "Last year Lizzy made posters advertising that she was a detective and I was her sidekick. But we never got any business. If we can solve this case, then maybe we can make new posters and advertise again."

And off they went one more time.

Sadly, this case does not yet have a good ending. I just checked with Lizzy. The Case of the Missing Scooter remains unsolved.

Thursday, February 19, 2009

Cold Sheep in Our Bed

Somehow this winter has seemed a bit colder and a bit harder to endure for me. I've worn more fleece and warm socks around the house. I've lit (or rather turned on) the fire more often. I've huddled under more blankets. I've whined more.

Ever notice how during the winter the ambient air temperature may be tolerable, but objects in the room can be downright freezing? Like the bathroom's tile floor under your bare feet during your 2 a.m. potty run? Or like the diaper wipes you are about to use to clean your daughter (or yourself after your daughter's diaper has leaked on you)?

A week or so ago I was whining to my wife about this particular winter discomfort. I said something like, "Why is it that in winter even though the air is warm, things get cold, like the sheets in our bed--or the toilet seat?" (Both of those have been particularly troublesome cold items on cold nights...)

Lizzy, who was sitting nearby doing something else and not entirely paying attention to the conversation, overheard that comment--but she misheard it and found it very silly. Laughing, she asked, "Why did you say the sheep in your bed get cold on the toilet seat?"

We all laughed at the misunderstanding, and Lizzy took great delight in repeating it. Like the next morning when I was waking her up and getting her moving she said, "That was funny when I thought you said the sheep in your bed get cold on the toilet seat." And then she laughed again. And she laughed so hard that stuff came out her nose, which made it even more funny and which then became part of the requisite retelling of this funny event. Like a few days later when we had a book group gathering at our house and Lizzy felt compelled to tell one grandmotherly figure, without providing any explanation or context, that the other day she had said "the sheep in mommy and daddy's bed get cold on the toilet seat" and she had laughed so hard "that snot came out of my nose." And she laughed again.

Fortunately, this grandmother has had 7-year-old grandchildren.

Wednesday, February 18, 2009

The Rub al-Khali

This is a message I wrote recently for our church congregation newsletter.

The southern portion of the Arabian Peninsula is dominated by the vast Rub al-Khali—the Empty Quarter. The name is fitting. The size of Utah, Nevada, and southern Idaho, this desert is filled with mountainous sand dunes, rising and falling hundreds of feet in temperatures that top 120 degrees and under skies that can go years without dispensing a single drop of rain.

Few people live in or travel through the forbidding Empty Quarter. But at the close of their overland journey away from Jerusalem, Lehi and his family turned their course in this direction. Nephi records that after traveling southeast along the coast of the Red Sea, their caravan veered east, taking a trail that likely led near or into the Rub al-Khali. In describing this next portion of their journey, Nephi says they “did travel and wade through much affliction in the wilderness” (1 Ne. 17:1).

Family travel in any wilderness would be a challenge; for that matter, driving an air-conditioned car across Nevada with small children is not always a pleasant picnic. But a family trip through the Rub al-Khali, hundreds of miles across an undulating terrain of hot, blowing sand, with pregnant women and infants, precious little water, and no rest stops or fast-food joints—Nephi’s statement that they faced “much difficulty, yea, even so much that we cannot write them all” (1 Ne. 17:6) begins to gather new meaning.

But then comes the miracle. “Great were the blessings of the Lord upon us,” Nephi declares (1 Ne. 17:2). The mothers were sufficiently healthy to care for the children. They were nourished and strengthened by God. The Lord “did provide means” (1 Ne. 17:3), and they made it. It took a long time—perhaps even years—but with the help of God they finally reached a haven in the midst of the desert: A lush oasis on the coast of Arabia, nourished by periodic monsoons that created a place where fruit and trees and honey could flourish. “We were exceedingly rejoiced when we came to the seashore;” Nephi says, “and we called the place Bountiful” (1 Ne. 17:6).

At times, our lives may seem like the Rub al-Khali. We may feel like we are the children of Lehi wading through much affliction in deep, heavy, hot sands. Water may seem scarce. The incessant wind may blow sand in our eyes. And we may climb dune after dune after endless dune with no relief in sight. At times like these Nephi’s testimony speaks to us: “And thus we see . . . if it so be that the children of men keep the commandments of God he doth nourish them, and strengthen them, and provide means whereby they can accomplish the thing which he has commanded them” (1 Ne. 17:3).

When you face such a formidable journey, when you wonder if the desert will ever end, when you feel exhausted from the effort, worn down from the heat and wind, and unable to take another step, remember two lessons Nephi learned in the wilderness: First, God is right there with you in the journey, even when you doubt his presence; and second, for you, as for Nephi, there is a Bountiful waiting somewhere on the other side and if you trust in God and put your hand in his, he will lead you there.

Tuesday, February 03, 2009

God Gave Us Families

At the moment, I'm up with Caroline, who woke up about 20 minutes ago--from a seizure, I think. (I had been soundly asleep, so I'm a bit fuzzy on the details, but I think she was making seizure sounds.) As I slowly pulled myself to consciousness and looked at the clock, my first thought was, "How does she do that?!?"

For many of the last several nights, Caroline has woken up between 2 and 3 a.m. As I pulled on my fleece and made my way to her room through the dark, I wondered at possible causes. Does the white noise CD we play every night (precisely to prevent such awakenings) repeat itself or skip or make some other disturbing noise at about that time? Does something happen in her body six hours after a feeding that wakes her? She eats between 8 and 9 p.m., and during the day she eats every four hours; by 2 a.m., she's probably getting pretty hungry (even as I type this, she is making smacking noises with her mouth, as she is prone to do, especially around feeding time). Is there some noise outside at about this time of night that wakes her? Some neighbor leaving for an early morning shift at work?

Whatever it is, it's surprisingly--and annoyingly--regular, this 2 a.m. wake-up call from the next room. If I had somewhere to be at 3:30 a.m., I'd appreciate this reliable alarm clock, but as my only mid-night appointment is with my pillow...

But once you see Caroline--even at 2 a.m.--it's hard to maintain your frustration. She's so adorable, and she smiles big when you lift her out of the bean bag she sleeps in, looking around curiously with those big, innocent eyes, unsure what to make of the world in the middle of the night. And then you change her diaper (which is most often very wet, and likely leaking by this time), and she kicks and lifts her head and gets all excited like this cleaning ritual is some sort of game we play. So you smile and you talk to her and kiss her cheeks and she smiles some more.

As I was changing her diaper just now, I was absent mindedly singing one of the songs that Lizzy has declared we shall now sing for bedtime every night. It's the new Primary song for this year: The Family Is of God (here's an mp3 of it). It has a catchy melody--one that sticks in your head and makes you sing it again several hours later... in the middle of the night.

So there I was, wiping and changing wet clothes and putting on a clean diaper and singing, "God gave us families to help us become what he wants us to be." And I looked at Caroline and suddenly the words came to the forefront of my consciousness, an unexpected intersection between poetry and the reality of my life in that moment. God gave me a family--including this 2 a.m. waker--to help me become what he wants me to be. And what is he teaching me at 2 a.m.? Certainly love. More? Not sure exactly. But there was a spirit to that song and to that moment that told me he is definitely teaching me something, shaping me into what he wants me to be. "This is how he shares his love," the chorus continues, "for the family is of God."

This moving, retrospective moment--wondering how God is shaping me and what he is teaching me--was quickly followed by another, more pragmatic, thought: "Whatever it is, I wish I'd hurry up and learn it so I can stop getting up at 2 a.m. every morning."

Well, she's back to sleep now, all curled up in the navy blue recliner we keep in her room. That's a recent blessing. We've discovered that the recliner cradles her just right and she will often fall back asleep by herself in the chair. This saves us from holding her until she falls asleep--which is often problematic when you try to put her back in her bed and she wakes up again... Anyway, I'm going to creep quietly back to my own bed now.