Slow Healing

Believe it or not, Erik is still not feeling well after almost four weeks, although for the most part, he has been pretending to feel peachy in front of others outside of our home. He has been lazing on the couch and watching us exercise in the morning instead of holding our hands and doing the moves with us. He has burst into tears at the tiniest things. He is not eating much of anything most of the time and then binges because he is hungry at other times, which makes him sick. He put himself to bed for a nap yesterday and asked me to read him a book.

Not normal.

This morning I thought things were improving. He was perky when my neighbor came to join us for some exercise. He flirted with her, rolled his toys around, and played his piano. I took him to school, and he seemed happy.

At lunchtime, my cell phone rang. It was Erik's teacher. She reported that she couldn't really put her thoughts into words but wanted to let me know that Erik was just not himself. He filled his diaper (a first at school in itself) with a large amount of toxic waste (although she stated it much more politely) and kept repeating things like "NO" and "I DON'T WANT TO." I thanked her for the call and waited for the school bus to arrive.

As Erik got off the bus, he had the driver racked with giggles and was his usual, chipper self. When we stepped inside the house, however, he politely declined lunch and went off to play with his trucks. My parents arrived to pick him up for the afternoon, and when they asked him if he was ready to go, he said he didn't want to.

Not go to Boppa and Gua's house? Something is definitely wrong.

As my parents climbed into their car to leave without him, I told my mother I would take him to the doctor today. Erik sat in exhausted defiance on the grass next to his tricycle. I sat down next to him and quietly explained that his Boppa and Gua were going back to their house. He seemed to be okay with that -- until their engine roared to life. The boy snapped out of his trance, looked up at me with instant tears shining in his eyes, and cried, "No!" He stood up from his soft place in the grass and began to run toward the car. They opened the back door for him, and he climbed in.

Why is it that Erik seems so vulnerable to everything on this earth to me? My brain reminds me of the stomach bug going around town that reportedly takes this much time to pass. I'm even in the medical field and am quite aware of what to look for and when to take my child to see a physician. He is hydrated and rested. But things are difficult enough on a daily basis without this crap. Especially for Erik, whose GI system doesn't work all that well without medication twice a day to begin with. Somehow I think the universe should just provide a free pass for us regarding this kind of childhood illness, but it doesn't work that way. I soothe and care for the normal bugs, cuts, and scrapes without much of a second thought but am always aware that every injury and illness has a deeper, ominous flavor because of Erik's physical challenges, and I can never completely silence that voice deep inside of me that attempts to send me into a panic. It doesn't have the power to do that anymore. However, its whispers still haunt me and always will. I can't imagine that as Erik's poor little body ages that this will improve at all with time.

That scares the daylights out of me.

Hold the Cheese

The doctor Erik saw recently called me this morning. She sounded two thousand years old on the phone, but she was very encouraging and assured me that his stool studies were completely normal. As for his symptoms, they continue but have improved. Every other morning I have to wash all of Erik's horrendously soiled bedding and pajamas. It may take another week or two to really determine if dairy is indeed the problem, but I was instructed to continue the strict discontinuation of dairy for now. The soy cheese has worked very well, although he tires of the milk. We'll try rice milk next. Erik is now successfully using the toilet sporadically, although it does not amuse him in the slightest and he usually refuses.

As for me, I continue to watch my friend with ALS suffer. He is slowly losing the function in his hand and will begin treatment with a BiPAP machine soon to assist with his breathing. He admitted today that he finds it more and more difficult to get out of bed in the morning. He coughs excessively throughout the day, finds it difficult to swallow food, and endures bouts of pain and spasms that are so intense I witness his skin turn lobster-red and his shirt soak up buckets of hot sweat. He is virtually unable to even talk through these episodes anymore. He puts on a very brave face, but things seem to be worsening every day. Last weekend as I flipped through the channels on television, I found a movie about Jenifer Estess, a woman who helped launch Project ALS with her sisters after being diagnosed with the disease. It was really difficult to watch, but I'm glad I did. She died in 2003 at the age of 40.

I took Erik to see his friend Samantha today. Shaena and I drove to the next town to take the kids to McDonald's for lunch. I ordered Erik a Happy Meal. He loves french fries and let me feed him torn pieces of an entire hamburger, although he had no part in putting any of it in his mouth himself. When we are out, I usually feed him by hand, as he freezes up around strange noises and other children. The french fries, however, were a different story.

After lunch in the play area, we took the kids to the gaping hole that houses the stairs to the Playland slide. Erik had no interest in entering this dark orifice, so after a brief comparison of the tunnel's size and the width of my buttocks, I sighed, took my tennis shoes off, and crawled up inside, encouraging him to follow. He wasn't buying it. I disappeared up the little spiral staircase, and he followed only because he was out of attractive options. We found ourselves at the top near a plastic tube that snaked out of sight down below. Thankfully, there were no other children using the equipment to complicate matters. Erik was anxious enough. I decided that I certainly wasn't going to cram myself back down the stairs and prayed that the grease trap in the restaurant wouldn't burst into flames while we knelt inside this gayly-colored death trap. I gently shoved a protesting Erik down the stairs, feeling like the most horrible mother in the world, and the tennis shoes capping his plastic orthotics made his horrific ride down the tube slower than molasses, prolonging his agony. Weighing several hundred times more than my son, my descent was much more rapid. I tried not to run him over and managed to gently shove him through the length of purple plastic tubing. The static from the friction against the slide raised my hair at the roots, and with everything being bathed in a purple glow, I felt as though I was moving through Grimace's lower intestine. Finally, we emerged. I was crazy enough to try it once again with Erik. He was even less amused this time. He looked at me, and his bottom lip quivered. His face reddened in alarm. He said, "Go home, Mama?" as he burst into tears. We were done. After I forced him to slide down one more time, we gathered our things, said goodbye to our friends, and drove home, enjoying the scenery and even driving through a farm supply store parking lot to admire the shiny, red tractors. I would consider the entire outing successful, although I wish simple things like play didn't feel like such a struggle. Or more therapy. I suppose every experience is therapy, no matter who you are, if you think about it.

I have attempted to utilize play areas and playgrounds with the help of my girlfriends more and more over time and have noticed Erik's general reaction is greatly improving. He still struggles with tripping, falling, and running into things and drops to his hands and knees to crawl over simple, unfamiliar surfaces that his brain doesn't define well while other kids zip past him without a second thought. The last time we loaded into the car after an hour on the playground, he told me he wanted to go back. That's a first for him. Now if only I could muster the same enthusiasm.

Instead, I still fight tears.

Lactose Intolerant

Peasant 1: Who's that there?

Peasant 2: I don't know. Must be a king.

Peasant 1: Why?

Peasant 2: He hasn't got shit all over him.

-- Monty Python (The Holy Grail)

Our doctor's appointment went well. One thing that absolutely rattles Erik at the clinic is the scale. He clamps his hands tightly over his ears and refuses to step onto the wobbly platform. The clanking the device makes sends him into orbit. The nurse asked him to step up and place his feet on stickers shaped like space ships, but I was required to force him to step forward, resulting in a complete meltdown. As she looked quizzically at us and tried to interpret just what in the dickens was happening, I quickly blurted out that Erik hates noise. There was hardly any noise whatsoever, but I know this particular type of metal-on-metal clanging is the reason Erik freaks out in this situation. It happens every time we visit the doctor. Why I bother explaining this to anyone is beyond me, but I insist on educating people about Erik. It's just awkward, awkward, awkward. Surely there are other children who visit this facility regularly with sensory processing issues. Right?

So after our super-accurate measurement (not) of Erik's weight (34.25 lb with me forcing him forward and supporting most of his weight with the palms of my hands), we waited for Dr. Brown. Erik still had his hands over his ears, despite me assuring him Dr. Brown would likely not be very noisy. It turned out that she was much older and straightforward than I expected. This was a pleasant surprise. She was also very quiet, which pleased Erik greatly.

I explained that after 24 hours of Erik being taken off milk and milk products, I saw the most normal-appearing stool appear in Erik's diaper this morning. Unfortunately, this means that there is a strong possibility Erik is lactose intolerant. She confirmed my fears that Erik has no extra body fat to lose and that eliminating dairy would be a gigantic pain but suggested I do it for the time being. This means no more macaroni and cheese, milk, cheddar, seven-layer burritos, or chocolate. Actually, milk or milk fat seems to be in everything. The nurse then gave me a small plastic bag containing three screw-top vials, some of which were filled with red preservative solution. It was an intimating-looking kit that looked like the components of a biological weapon. Two Smurf-blue latex gloves were thoughtfully folded and placed in the bag, and I chuckled to myself thinking of the messes I have scrubbed out of Erik's bed each morning and from the bathtub. I wish motherhood was as neat as a pair of latex gloves. It's not. Not for any mother I know, anyway.

I am to scrape Erik's diaper with wooden tongue depressors and collect samples of stool for the entities I am certain he doesn't have (ova and parasites, etc.). However, I will do this in the spirit of good sportsmanship and patient compliance and deposit a teaspoon of the nasty material into each vial. I have been instructed to transport them to the hospital within a couple of hours or place the specimens next to my collection of pot roasts and popscicles in the freezer until I am able to get them to the hospital lab. Between the wide feline skid marks resulting from Gracie's thyroid problems and the material that springs forth from Erik's bum, I choose to keep the last space in the house, which happens to be inside a major appliance, completely poop-free. I have to draw the line somewhere. Instead, I plan on driving to the hospital with my sloshing bottles of dung tomorrow.

After our appointment, Erik collected his sticker from the nurses' station and actually seemed to really question me about its purpose for the very first time. I usually stuff stickers in my purse for the nurses' benefit, as Erik formerly cared less about stickers, candy, or toys. This time I handed him the sticker, and he seemed interested in it. I was pleased. He said goodbyes, thank you very muches, and see yous to each nurse and the doctor on the way out. The way he said these things seemed to surprise and thrill each of them. They giggled, which made me giggle. Erik does pour on the charm.

We then took our hemp shopping bag to natural food store and purchased expensive tofu shaped like mozzarella cheese and a carton of soy milk. The faux cheese had a label assuring me that it actually "Melts like real cheese!" Yikes. He drank three glasses of the vanilla-flavored light soy milk when we returned home. I tried it and thought it was the sweat of the devil. I'll stick to skim, thank you. The jury is still out on the cheese.

I plan on making pizza tomorrow night. We'll see if anybody notices the tofu.

Wasting My Time

Erik and I are going in to the pediatric clinic at 9:10 a.m. tomorrow. I became instantly cranky when I called the "nurse advice" line, and she told me that collard greens and kale were great for GI problems. I felt like smashing myself over the head with the phone for even attempting to get in to see someone via this route. I don't know much about children, but I know I have yet to see a 3-year-old gleefully mowing down a plate of cruciferous vegetables, especially when they are ill. I eventually was transferred to the appointment center and was informed our doctor was not available. Sadly, I don't even care anymore. Like it matters! I stated very simply that my son had a GI problem on top of a genetic disorder nobody else in town has/that no physicians know jack about and demanded to see someone who regularly saw children with Down syndrome. Apples and oranges, I know, but I couldn't think of anything else to ask for. Erik's GI problems are likely not related to WS, but children with WS have tendencies toward certain ailments, and I just don't want anything missed.

I plan on being a complete and total pain in the ass, after which I will probably end up calling the children's hospital in Portland, anyway.

Morning Rambling

I turned on the news last week as I fixed breakfast and heard that a man on a bicycle had collided with an SUV making a turn not far from here. He died at the scene from massive head injuries. When they announced his identity, I gasped. He was a member of our church congregation whom I see regularly. What was worse, however, was that he was the son of my author-friend who has been so kind to me and Erik. You might recall that she is also the mother of a woman with severe developmental disabilties that resulted from a bout of childhood meningitis. She wrote a book about her family, and that's how I came to reach out to her and ended up sitting in her home eating freshly-baked scones last winter. You would think there would be a limit to the amount of pain one could experience, but apparently there is not. I can't help but feel frightened by this.

I have a head cold in the heat of summer. Actually, all three of us are sick with it. It was over 100 degrees yesterday, and I stayed on the couch watching Food Network challenges. There was a dry, windy storm of some sort in the middle of the night, and the gusts whipping through our bedroom windows and doors were almost deafening at one point, making it sound as if we were riding on a stagecoach in the dead of winter. I opened things up even more, and the whistling at least ceased. The air smells like a campfire, so I assume something nearby is engulfed in flames. This does not result in high-quality sleep. I'm sitting in my office now, and rumbling thunder and sheets of lightning are beginning over the desert. It certainly doesn't feel like five in the morning.

Erik's bowel has been malfunctioning lately. One of the wonderful symptoms WS often manifests in children is constipation so severe that it can result in prolapse of the rectum. Erik briefly had constipation as a infant when his calcium levels were probably sky high and we were completely unaware of his syndrome. I remember seeing blood once when a nurse took his temperature. Since then, however, things seem to pass right through him, sometimes undigested. I have to change his bedclothes almost daily, as the amount of what comes from him easily maxes out and overflows his fluffy little diapers. I change him often. What comes from him has little to no at least normal odor and looks, to say the least, alarming. There is a lot of mucus. I will call the doctor today. Three things that come to mind are (1) food allergy, (2) Crohn's disease, and (3) thyroid problems, although it could be anything, I suppose. This has gone on for months to some degree but only seems to be worsening in intensity and might make school more than a little dificult at this point. I'm terrified he has a food allergy. The last thing we need is to be subtracting things from the relatively short list of items he eats.

Erik has discovered the joy of attending barbecues. He loves everything about them and says "barbecue" in his usual Cajun accent. I can just visualize his cute little face on a bottle of BBQ sauce on a supermarket shelf someday. Hey, it could happen.

And now, as promised, CHIA: DAY ONE.

1) Submerge small terra cotta cat in bucket of water. Leave overnight, ensuring kitten is good and dead.

2) Mix a portion of the seeds from provided packet with one-quarter cup water. Let sit overnight until the mixture thickens into a gel reminiscent of the opening scenes of Invasion of the Body Snatchers. Tell family what is sitting on windowsill so dark muck does not get spread on toast or dumped down garbage disposal.