Sickness or Seizures

Well, Caroline is better now, after a week or two of being sick. We know she's better because now she's having seizures again. And she's not sleeping well again. Both sure signs that she's healthy. Sometimes I'm not entirely sure whether I prefer Caroline to be healthy or sick.

In early February, Caroline was healthy, and not sleeping well. She would wake up about 2 a.m. each morning--often with a seizure. Sometimes she would go back to sleep, sometimes she wouldn't. She was having six to eight seizures a day. Then on Feb. 6, she started sounding congested. She had six seizures that day. On Feb. 7, she woke up at 2 a.m, then went back to sleep until about 7, when we measured her temperature at 104. She only had two seizures that day. Over the next few days the fever continued and she had between two and four seizures a day. She started sleeping better on Feb. 9. On Feb. 11, Christine took her to the doctor, who found a blister on her eardrum. The doctor prescribed an antibiotic.

During the next 10 days of being on the antibiotic, Caroline had a total of five seizures, and she had several days with no seizures at all. Of course, this was also when the really negative side effect of Caroline illnesses kicked in: she got sad. For a little more than a week, she cried a lot--almost constantly for a few days.

Crying is a regular part of Caroline illnesses. At such times there are often only two things that can cheer her up. First, you can hold her upright, with her head on her shoulder. This works best when you are standing, but sometimes it works if you are sitting also; with her now weighing about 35 pounds, it had better work sitting, because our backs can't handle standing for long. The second option for cheering Caroline up (especially helpful when option one doesn't work) is to put her in the car and go for a drive. We don't know why this works, but it does. Sometimes you have to drive for 15 to 20 minutes before she'll calm down, but after that, she'll often remain happy in the car for hours--even if the car is just sitting in the garage (but if you take her out of the car, you may have another long drive ahead of you to cheer her up again). During this time, we were tempted to take a spontaneous road trip somewhere far away. Instead we went to the planetarium in Salt Lake--which was good for an hour drive each way (and, surprisingly, Caroline was quiet and happy in the planetarium.)

Anyway, after several days of sadness, no seizures, and good sleeping, she got healthy. She cheered up on Feb. 21, the last day of the antibiotic. She had no seizures that day or the next. Then suddenly on Feb. 23, she had 12 seizures; 15 on Feb. 24. On Feb. 25 she woke up at about 4:50 a.m. and had 18 seizures. Feb. 26 it was 2:30 a.m. and 9 seizures. 2:15 and 17 seizures the next day. You get the idea.

This pattern has repeated itself over and over in the last year--with the seizures, anyway. The sleeping/not sleeping pattern is a recent addition to the cycle. Not that we really have a choice, but it seems that we either have seizures or sickness. I guess I prefer Caroline healthy, because, well, she's healthy. And when she's healthy, she's generally happy. (And the sadness is much harder to deal with than the seizures.) So we're grateful that at the moment, Caroline is happy and healthy--even though that sometimes means we are listening to her giggling loudly through a seizure at 2:30 a.m....

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).

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.

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..."

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.