The saying "May you live in interesting times" is HIGHLY overrated

Sometimes there is a downside to blogging in that the medium is both contemporaneous and public. Independently, neither of those things bother me (and even conjoined I'm rarely bothered by them). But occasionally, like today, I feel the need to write about something that is potentially bad. If the blog were public, but the public was reading it a year after the fact, it wouldn't be a big deal because the outcome would be known...there wouldn't be any suspense or worry. Or I could write privately, and since it wouldn't be published to the world no one would know and worry. All I would have is a journal of neurotic ramblings to review at my leisure, something to toss aside and conclude, "Man, I'm so glad that period of my life is over! Who was that crazed person?"

But I don't really want to have two blogs, or a blog and a spiral notebook, or any other combination of journals. As it is I have fifty-odd pages of rough, scribbled notes from my pre-blogging days when I would write while nursing Michael. It may take me ten years to transcribe them into Word. I certainly don't want to add to it.

So here goes. But first, the backstory:

Laurel has had some difficulties potty training. We tried to do it last summer and I quickly learned she simply was not physically ready. She didn't seem to know how to hold and release her urine and instead dribbled a tablespoon or two of pee every 10-15 minutes. So I tabled the subject for six months and started again in January, only to realize that at 2.5 years old she was still peeing the same way. Again, I stopped working with her.

When Michael potty trained in April, I could tell Laurel REALLY wanted to do it too. She was great about going potty and would push out her few drops, but then she'd need to go again almost immediately. I stopped rewarding her for peeing on the potty (since she was fully competent at doing it) and tried to reward her for holding it in a bit. But as much as the child LOVED jelly beans and M&Ms, she could not hold her urine inside her body even if it meant receiving the Almighty Candy.

I mentioned it to the naturopath and he thought it was probably time to examine her bladder to see if her plumbing was hooked up right (we also ruled out a UTI). So off we went to a pediatric urologist, who sent us to the hospital for the ultrasound. The results came back somewhat normal. There wasn't any obvious deformity, but she had some fluid in her kidneys. The naturopath spent a good thirty minutes explaining kidney/bladder function to me and analyzing the size of each and the amount of fluid. Ultimately he felt like there were some potential issues, and considering how long Laurel had been symptomatic, recommended we get an MRI.

Now, for an MRI to be accurate you have to hold perfectly still for a long period of time. Since this is basically impossible for a toddler to do, they have to be sedated. I really struggled with this, and conferred with the pediatric urologist, the naturopath, and her pediatrician. They all thought it was worth doing. But up until the night before the test, I was wavering. It just seemed risky (wrong) to subject Laurel to so much heavy drugs just because she wasn't potty training easily.

Complicating the issue even further, in the week or two before the MRI, Laurel started to pee in larger quantities. About once/day she'd pee maybe 1/4 cup of urine. And she did start to have some periods where she'd not pee for an hour or more. But since she hadn't been drinking/eating much, I didn't know whether to attribute it to potty training or just basic dehydration. But there was enough of a difference that I further worried the upcoming MRI was a needless risk.

We had it last Thursday. Michael spent the night at Grampy/Grammy's as we had to be at the hospital at 8am. And because life is what it is, they didn't call us back until 10:30 so I had to kill 2.5 hours with a toddler who hadn't eaten or drunken anything since the night before. She was HUNGRY. And THIRSTY. I explained I was sorry, that she couldn't eat anything until after they took a picture of her belly, and after awhile Laurel stopped complaining of wanting food and started insisting they take her picture NOW Mommy. Take picture now please. Now pretty please Mommy.

It was probably the only time I actually WANTED that MRI to happen.

Any relief I felt about it all evaporated pretty quickly though. The test, which should have lasted less than an hour, took 1.5 hours...just the sort of thing to put a mother over the edge. And then her recovery, which should have lasted 20-30 minutes, took 1.5 hours. The nurses kept commenting how they had to "really load Laurel up on drugs," how they had to "give her so much drugs," how "that's why it was taking so long for her to wake up afterwards." That's when I learned that they actually had to STOP HER BREATHING for 15 seconds to get the image - a nice little fact I hadn't known before. So I sat there attempting to wake my unresponsive daughter: shaking her torso, flopping her arms and legs, saying her name...and it all was deeply unsettling. Upsetting.

And the rest of the day wasn't any better. She finally woke up and we drove home, but then as the afternoon went on she declined: very lethargic, vomiting, fever of 103.5. It was one of my worst moments as a mother, and I came to the painful conclusion that the MRI was a MISTAKE. I'd made the wrong choice, and my child was suffering for it. I felt simply awful. Even the concept - a three year old with incontinence - sounded silly. Maybe she just needs more time for her bladder to mature. After all (and everything always comes down to this) she only weighs 22.3 pounds.

Laurel did recover. And to be a bit kinder to myself, I'll accept that she probably didn't get her fever from the anesthesia since she also came down with a cough and runny nose (and still has them five days later). But I stuck with my conclusion that the MRI was a mistake. Too much proactivity and intervention, not enough caution and patience. But as with most things I do that I later regret, I recognized that it's over, I can't undo it, but I can move forward knowing I'll never do it again.

Which, ironically, is what I was telling the urologist Monday when she called to give me the results: it was awful, I regret getting the MRI, but at least it is over and done. In response the urologist sighed, and then said, "Well, I have some bad news."

They want to do another MRI. While Laurel's kidney/bladder function came back normal, the radiologist spotted a syrinx on her spine with a "significant" amount of fluid inside. It could be causing her incontinence issues. But a syrinx can also mean many many other problems so they want to get an image of her cranium all the way down to her tailbone.

My initial reaction was no. Not going to do it. The test was awful, I still suspect she had a bad reaction to the anesthetic, and frankly I just didn't want to do it. TOO MUCH MEDICAL CARE - I'M DONE.

And then there's the cost. You wanna guess how much a MRI costs? $1200? Yeah, that's what Ken guessed. Nope. 9K-12K. Course, we wouldn't actually pay that. No, our portion is "only" 20% of that 9K-12K. Of course, it goes without saying we will pay what we need to in order to care for our children. BUT. OH. MY. GOD. It's a good thing I've lost some weight this year because it looks like Mommy is going to be hitting the street corner.

In all seriousness though, in the 48 hours since I talked with the urologist I've come around a bit. For one thing, I've gotten two second opinions and while they didn't expressly say it, they thought I was being a bit nuts in my concerns about the second MRI. Frankly speaking, it could be the least of our worries. The pediatrician was already mentioning spinal surgery - something I'm COMPLETELY NOT READY to contemplate yet.

So there you go - it's out. Now you know why I'm up in the middle of the night with visions of cancer and/or paralysis running through my head. Then contrarily there's the image of the radiologist calling and saying, "Oops! Nothing's wrong - it wasn't a syrinx after all!" Logically speaking I know neither of these extremes will probably happen, but I'm a mother and exist to worry.

And eat. Which is why, if I'm going to hit that street corner to pay for this stuff, I'd better do it before the 50lb bag of M&Ms I'm inhaling hits my thighs.

I stand corrected

Overheard in the car this weekend...

Laurel: "Look Mama look! Up in the sky! There's clouds! I see lots of clouds!!"

Me: "Wow Laurel, me too!"

Pause...

Laurel: "Silly Mama, you're not TWO, you're THIRTY-SIX!"

Truly my "Little Monkey"

Whenever I have a long absence on this blog, I feel tremendous guilt about the things I am not documenting. I literally have no memory - if something is not written down the kids will grow up and never know it happened. So in many ways I get panicked when a week or two goes by, because usually we are doing things Fun! and Exciting! that I want the kids to know about when they grow up.

What soothes me is the suspicion that thirty years from now they won't care a lick there were no entries for a week or two. I doubt Michael will say, "Damn you Mom! What did we do on June 22, 2009? That day is now lost FOREVER!!!"

Course, considering this blog may be three gazillion pages long by then, a gap might be viewed as a blessing in disguise. Perhaps Laurel will think, "Oh thank god Mom was having writer's block that week. I just don't think I could read another post about someone peeing on the carpet. Unless, of course, the peeing child is Michael. I just LOVE humiliating stories about my big brother."

At any rate, tonight I was going through my photos trying to recall what it is we did in the past few weeks when I came across some pics I took of one of Michael's OT sessions. He graduated to the Big Kid Room last month, something we are all pretty excited about. Michael and Laurel are excited because the room is bigger and has TONS of new things to do. Donna and I are excited because when we first started therapy, Michael couldn't handle ANY of the activities in this room sensory-wise. He was so defensive he simply pressed himself into the wall farthest away from us and screamed.

Now his proprioceptive system functions normally and we are working on strength. One way we do this is to have him "climb the hammocks." The ceiling of the room is draped with all these spandex-ish hammocks that stretch to the ground. Michael climbs into one and then has to climb from that one to the next, and the next, and the next. The hammocks are slick so it takes a lot of motor planning and strength to navigate them.

Using the stairs to get into the first one:


Collecting himself and heading for the red one:


Almost there:


He made it!


Then it is on to the next hammock and the next one...the goal being to reach the "rainbow" hammock:


And then he has to climb all the way down. Here he is on the lowest hammock spinning in a cocoon, something that would certainly make me vomit. Yeah, I'd say his proprioceptive system is working JUST FINE:


Laurel, meanwhile, gets to play in the ball pit. You wanna know what's better than a ball you can throw around? Why HUNDREDS of them of course!


Here are the kids taking turns swinging from a bar and landing in the ball pit:








You want to know how I know this is all working? A few months ago Michael couldn't hold onto a bar long enough to swing from one place to another. He'd literally fall within half a second. Now he can swing back and fourth SIX TIMES before deliberately letting go and falling into the balls.

Progress.

You say tomato, I say tomahto

"Laurel, guess what's in two days?"

(Not really, but since Laurel defines birthdays not as the day you were born, but the day you get cake, candles, M&Ms, jelly beans, and presents, her "birthday" will be on Saturday.)

Smiles. Lots of jumping. "Warwuh ERPDAY!"

"Yes, Laurel, your birthday is in TWO days!"

Jumping stops. "No two days! No two days! EIGHT days!"

"Laurel, look at this calendar. Here is today, and here is tomorrow, and then THIS day is your birthday. That's TWO days from now."

Stomping begins, coupled with flailing arms and wails of protest. "Eight days! Eight days! EIGHT DAYS!!!!!"

Tears.

"You want your birthday to be in eight days?"

"Yes!"

"Hmmm...OK, Honey. It's in eight days."

Happiness. Rejoicing. "Warwuh erpday eight days! Yay!!!!!"

Course, "I hate you" is that much closer now

Yesterday I was working in the kitchen when Michael came in to ask if he could watch TV. He'd already watched about 500 hours that day as I was trying to get a lot of stuff done, and I was genuinely concerned that if he watched even one more minute his brain would explode all over my freshly dusted furniture. So I told him no.

"I don't like it when you tell me no," he said to me.

Now, he didn't say it quite like that. He got his pronouns all backwards, and there were a few missing words. But he was close enough that I thought I heard something, so I repeated it back to him for clarification.

"You don't like it when I tell you no?"

"Yeah," he whined.

And my heart practically burst out of my body. This was the first time he'd ever referenced his emotions to me. And there was a "why" component. He was unhappy BECAUSE I said no!!! Cause and effect! Complexity! I was EXCITED and THRILLED and PROUD and EUPHORIC all at once. At that moment I was so full of love for him I was willing to pretty much give him whatever he wanted.

Except let him watch TV. Really, I had *just* dusted all the furniture. So instead I knelt down and gave him a big hug and told him that I didn't like it when people told me no, either. Sometimes life just sucks and you have to deal with it. Then I offered to let him play with the garden hose out back, and he ran outside to wash the ground.

Oh be still my heart!