Colon Blow

by Mary on August 17, 2011

[Tim: Mary tells her story about everything that happened over the last few weeks that I first posted about in “When Medical Emergencies Attack Your Spouse”.]

Towards the end of June, my tummy started to hurt a little. By the beginning of July, it was a bit more bothersome, and on July 2, I had a really bad night. I assumed this was another diverticulitis flare, and told Tim I was going to go to the ER and probably get some oral antibiotics, and come home. The doctor told me it looked REALLY minor, and that 10 days worth of antibiotics would take care of it.

Except, the pain wasn’t getting better, and in fact got worse. I lived with it until the next Sunday… and then called my parents to say that I was going to the ER, that I would probably be put into the hospital for IV antibiotics, and could they please come and stay with the kids. I packed my little overnight bag with some pajamas and a pair of clothes to come home in, and off Tim and I went. The CT scan confirmed that the really minor place looked a goodly amount worse, but again, I figured there would be IV antibiotics, and I would go home.

I spent the next few days attached to IV antibiotics. My parents brought Dale Jr. to visit on Monday, and he climbed onto the bed and we snuggled. Everyone was very careful to keep him from doing me any damage, but I just hadn’t really started feeling better from the antibiotics yet.

On Tuesday, the surgeon came in and started up about surgery again. I looked at the man and said, “Look, you’re a surgeon. Everything looks like it needs cutting to you. I want a second opinion… by a gastroenterologist.” Enter the gastroenterologist on Tuesday afternoon, who began our conversation with “I haven’t read your chart.” I immediately bristled, and then calmed down when he continued, “Because I don’t want to be swayed by other doctors’ comments; I only looked at your scans.” I looked at him for a minute, and then he sat down in the bedside chair and sort of sighed and said, “You need to have this surgery. This place looks pretty bad, and it’s not going to get better.”

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And sometimes it just goes all to crap…

by Tim on August 10, 2010

“I’d piss on a spark plug if I thought it’d do any good!” – General Berringer, “War Games”

Well, as they say, “$h!t happens.” And so it did.

Our most recent in the Developmental Achievements We Could Do Without series was the J-Man’s newly-discovered ability to climb out of his crib. We’ve dreaded this to be honest as one of those points of no return that would mean we’d have to nuke the existing sleep routine we spent months and years building and basically start over. Within the last few days, we did discover that he’s figured out how to climb back in his bed, which is certainly a plus except that he actually has to want to.

Through our own flavor of Spy vs. Spy, we got him to at least stay in his crib by employing technology he doesn’t yet understand in some warped assertion of power by us the alpha parents. Believe it or not, that much is still kinda working. He has been staying in bed recently until he falls asleep.

However, here’s where it hits the fan, or lands under the fan as the case may be.

When last we talked about this tale many months ago, the J-Man was stripping down while still in his bed, which led to all sorts of fun and funky stuff to deal with in the mornings. For months we’ve been winning the battle thanks to our at one time desperate but in hindsight rather genius idea of putting some sort of shirt over his sleeper to stop him from getting out. Even the Great Flexi-Houdini J-Man wasn’t able to figure out how to get out of it. But as often happens, at some point a wasn’t can easily turn into an is.

It was a good run, but it appears that all good things must come to an end. And some of those must fail in a big pile of excrement, particularly one that results from an almost-five-year-old getting nekkid before it’s time to.

And this is often how changes announce themselves in life. Sometimes you get a religious epiphany, a double rainbow, perhaps the Voice from God, and maybe you simply hear that still small voice. And then there are the times you get a bunch of turds in the floor. However it happens, it’s pretty clear that when any of this happens, a wind of change is coming.

I really don’t know how to deal with this except to say “it happens” and try to come up with something before we run out of sheets, his pajamas, laundry soap, Clorox wipes, latex gloves, and bleach. It’s not like we’re flush with cash, the patience to work it out, or the time to sit and ponder it forever. We just weren’t quite prepared to deal with this latest assault.

This really wasn’t the week to have another load of stuff dumped on us. Yeah, none of us really have time for this crap, but what do you do? It’s not like he’s trying to be a butt about it. “All behavior is communication” is a fundamental principle for autism, so we just have to get to the bottom of it. We’ve just run out of ideas in our arsenal.

Maybe we’ll come up with another desperate but astute idea to wipe out this problem, but it always feels like we’re behind wherever he is. Perhaps if we could just crack the code of potty training, this much of it would come to an end. What a relief that would be! I know we have a good track record of ascertaining the solutions eventually, but at the moment, that’s not very assuring. Just feeling kind of bummed about it all. Well, this too shall pass, I suppose.

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Where Am I?

by Mary on April 19, 2010

Why is it so hot? Why am I in this handbasket?!

The J-man has been on Spring Break for three weeks now, with one to go. It has been, for the most part, wretched. There has been so much crankiness in our house that I’m surprised it hasn’t split at the seams already. Maybe by this weekend!

Never before have we seen exactly how much he craves the routine of school. The sensory overload of, well, everything he sees, touches, eats, or hears has boggled my mind. I watch him struggle, and watch us struggle with him, and I feel overwhelmed. Tim feels overwhelmed. Dale Jr is still going with the flow, although he will occasionally look over at his big brother like, “Dude. Calm down!” The J-man, whose bedtime and morning routines have been stable for months, has suddenly needed to be dragged (literally) to the bathroom for teeth-brushing and shower, dragged back to his room for clothes, forced into his clothes… and then at night, carried/forced into taking meds and having teeth brushed, manhandled into pajamas… He bit me the other day on the finger so hard that I still have a blood blister 2 days later. He went a couple weeks where he ate nuggets so rarely we were concerned about his protein intake, but thankfully that seems to have subsided. No amount of brushing/joint compressions/smushing has seemed to help.

Of course, none of this is helped by the extended family’s illnesses/surgeries/dramas going on, and the fact that both Tim and I have been absolutely covered up in work. I’m leading a project right now, and I haven’t done that in a long time. Tim is frantically working to meet a deadline, but he can only get so much work in per day, because of having to be with the boys all the time. The house is a wreck, and we don’t have the energy to fix it, but because the house is a wreck, we feel even more stressed.

Tim and I talked last night in bed, and I told him something I had read recently on a blog. Someone said, “Nobody is coming to save you.” They were talking in terms of money, but also in terms of regular life.

I realized that lately, I’ve been reading fiction where there is ALWAYS someone there to “save” the main character. There is always some distant relative you’ve never met who dies (but because you never met, you don’t feel too bad) and leaves you a house, or a huge amount of money. Something relatively small that you were left by your elderly godfather is actually a rare item worth $80K. Or, suddenly a nanny appears who is able to care for your children AND clean the entire house with one hand tied behind her back, and you can afford her full-time. (We actually have someone who comes in for a few hours every couple of weeks, and we LOVE her. But we need more than a few hours!) Somehow, you stop eating because of stress, and look down at yourself and have magically lost 4 dress sizes.

I realized that I have been behaving like somebody was coming to save me. It’s not going to happen. I need to start acting like that.

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Are You Smarter Than a Four-Year-Old?

by Tim on December 9, 2009

This past weekend, we hit a pretty big low around here. We’d been having all sorts of problems – on top of the myriad other sensory problems – with the J-Man pulling off his sleeper (not unzipping it, but just plain shimmying out of it) and diaper every night within five minutes of going to bed, peeing in his bed, and then just lying there. We’d go in, reclothe him, change his sheets, fuss at him, and put him back to bed.

For a while, this was enough. One cycle of him stripping down and us coming in apparently was enough for him to then settle in for the night – clothed – and sleep. There was the other issue that he’d strip the second he woke up in the morning and do the same thing. If we weren’t in there fast enough, it was time to change sheets again and clean him up as part of everything else we do to get him ready in the morning.

Then about a week ago, things really went downhill. He wouldn’t keep anything on while he was in the bed. We tried fleece sleepers with feet, without feet, two-piece pajamas, etc. and nothing stayed on. We’d check on him a few minutes after changing him and the bed, and there he was naked as the day he was born with his clothes and diaper wadded up in the crib with him. Finally, we ran out of clean sheets. We started laundry, but quickly he fell asleep. So, we let him sleep au naturel.

Next morning, he was wet, of course, but we marched him to the shower, cleaned him up, and went on with the day. Next night, same ordeal, so we just gave up and let him sleep that way again. After the last ‘argument’ with him about it, once we let him be, he fell asleep quickly. Same morning, similar trip to the shower and on with the day.

We weren’t happy with this since obviously he doesn’t have enough control yet to not wet his bed, but short of restraints, we had no idea how to keep his clothes on him. He’s widely known for his Houdini skills and feats of flexibility, trust me. We decided to pick the less bad option and let him sleep that way.

This is where the concept of ‘less bad’ takes a hideous turn.

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Trying to Get Perspective

by Tim on November 29, 2009

These past weeks have been a serious reality check for us. All of us have been sick, hurt, or both at one point or another. Not surprisingly, this has weakened both our physical and emotional defenses. That’s a nice way of saying that we’ve turned into a bunch of grumpy, rundown, sick people who aren’t coping well.

I tend to process things best by writing about them. This has been one of those periods where every time I sit down to write, my brain just locks up like an overloaded computer. If nothing else, I guess it’s made me appreciate perhaps a little of what days are like for those of our kids whose brains are overwhelmed most of the day every day.

It recently became evident that we were losing control of most facets of our life. The J-Man was obviously experiencing some significant changes to his sensory system, and seemingly none of them for the good. He seems to shoot wildly between wide-open, screechy, running around, stimming overload to almost totally shut down. It’s hard for him to find a happy medium. That on top of all of our physical and emotional wear-and-tear and stress so thick you could cut it with a knife, we’ve been fast reaching an unsustainable place in life. And then last week it became really clear that it was worse than we thought. (More on that in a second.)

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by Mary on November 10, 2009

The Flashlight family had one of those weekends, and it has carried into this week. We went “big grocery shopping” on Saturday (good thing!) and Tim mentioned a couple of times that he felt funny. I assumed it was a Man Cold (YouTube link) but is seems to have been something much unfunnier. He has spent the last 2 days trying to keep down water. We’re up to watered-down Gatorade and bouillon for him. YUM!

Funny conversation Sunday night:
Mary: (grabbing the cup on the edge of the bathtub) You want some of this Gatorade?
Tim: (answering from somewhere down inside the bowl) I think the cat may have drank out of it. Do you think it’s still OK?
Mary: NO!

The boys both have colds – a newborn having a cold is just AWESOME, y’all! Plus, since we went to Dale Jr’s 6 month appointment last week (which is probably where we all picked up the germs), and were roundly scolded for not having him already on “3 meals, plus a snack,” of solid foods, we’ve been trying to shove more food into him. And that? Has resulted in unpleasant tummy. Screaming, crying, straining, unpleasant tummy. Today I tried adding prunes to the mix, and have decided we’ll have to work up to those 3 meals plus snack.

The J-man is constantly wiping his nose with his sleeve, which means that he has a sore spot underneath his nose, and some serious cheek chappage. I wish there was some way to teach him to blow his nose, but I can’t figure it out. It’s not like he’s going to mimic me doing it. He’ll also hand us a tissue and ask for “no z” but that just gets the tiny bit under his nose, and doesn’t really help because right after we use the tissue, he swipes with this sleeve again anyway. He’s been watching WAY too much Laurie Berkner and Signing Time, but that’s about how much I can handle while carrying around the other sick baby.

And then there’s me. I’ve been OK, except getting a cold, but am being worn down by the lack of sleep, and keeping up with 2 sick kids and 1 sick husband. I now sound as though I am a 55-year-old, 40 pack-a-day smoker.

Thank goodness for Pepaw who came over on Monday, and for my friend Elly who came over on Sunday night when I thought I might have to take Tim to the ER.

We’ll be back!

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Do the “Whatever It Takes Pokey”

June 7, 2009

Things have been ten kinds of rough around here recently. Surviving the day has been our goal of late. I admit that I don’t much like the person I’ve let myself become lately. I’m grouchy, snippy, frayed at the edges, and generally unable to cope with much. Anybody screaming sends me over the edge, which […]

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Time flies when you’re too tired to tell time

May 20, 2009

I just realized it’s been a week since we last posted. Yikes! The last few days have felt rather like survival mode. Little E has awful reflux, so none of us are sleeping. We’re on our third medication now, which had to be compounded and the only compounding pharmacy is 30-40 minutes away. That doesn’t […]

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