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Thursday, April 27, 2017

Rough Patch

Lots to unpack here.  Where to start...

Lily, always a good sleeper, if somewhat more of an early bird than daddy might like, is not a good sleeper anymore.

She goes through these little...streaks or trends or phases, so in the past, when she hasn't been sleeping I sort of chalk it up to a phase, or maybe she's coming down with something.  But at this's been since daylight savings time last October ...I think I'm ready to say, "she's not a good sleeper".
It could be worse of course.  Autism/ADHD and no sleep seem to go hand in hand a lot, and I've certainly had a nice long run of "in bed at 8 and up at 6".  Now we're at "in bed at 9 and up at 3".  That's painful for a guy who can't get to sleep much earlier than 11 on the best of days and usually gets to bed around midnight only to wake up at 5:30 to start my work day.

So to go to bed at 11...or midnight...then wake up at three for the day is...draining.  I wrote a little about what it does to me when I'm sleep deprived >>here<<, but in a nutshell...the patience I need..NEED to deal with some of Lily's challenging behaviors is not in abundance.  Or Emma, honestly.  I snapped at her yesterday for something that I ordinarily would have just laughed about.

So that's the first thing.  I need to find a "solution" to this problem.  I use a monitor in Lily's room.  That way I can tell when she wakes up and get her on the potty. 

I could turn off the monitor.  Except she has been getting out of bed and coming down the hall, or even the stairs lately.  And she is not the best at stairs.  Especially if she's wearing slippery socks on the hard wood steps.

I could install a gate at the top of the stairs.  That might be okay.  I could turn off the monitor without worrying about Lily taking a spill down the stairs.

I could see if there's a sleep aid Lily could take to keep her asleep.  Getting her to sleep is no big deal...KEEPING her asleep is what I need.  Would dosing her with melatonin when she wakes up help?  Maybe.  Not sure.  But melatonin has been pretty ineffective with her in the past.

I could do nothing and hope this...6 month phase passes.

I don't know.

Help at home.  I got approval from my insurance company for a home health aide for Lily.  She started a week ago.  I was approved at the end of January, but it's taken this long to find a resource.  Now that she's started, it relieves a lot of the burden from grandparents having to drive 40 minutes one way to watch her until I can get home from work.  This is an amazing benefit, and I'm slowly getting comfortable with it.  Right now it still seems very new and I'm still stressed out about it, but hopefully I'll mellow out with time.


Lily is growing up.  I won't go into the personals, but she's growing up and I have a plan, and that's basically all I guess anyone needs to know.  Not that anyone NEEDS to know it, but if you were like...what the hell is Jim going to do when Lily goes through puberty...Jim has a plan.

If you don't have a plan, feel free to reach out to me.  I like my plan.  People that need to know stuff know stuff.  And they know what to do.  And I know what to do.  And if you don't know what to should figure that shit out sooner rather than later.

Was any/all of that cryptic enough?  Anyway, if you have a little girl like Lily, and you're considering your options, I'd be happy to discuss it with you "off blog".


It bothers me that I'm never sure if my little dashed lines are all the same length.


Lily had a couple seizures at school the day before yesterday.  We've long suspected seizure-like activity with Lily, but up until Tuesday nobody had ever really witnessed them who had a lot of experience.  The school called me and they sent her to Children's hospital ER in a "princess carriage".  I drove to meet her there.

We learned nothing.  Lily had previously done a sleep-deprived EEG that was inconclusive, and we elected not to do a 24 hour EEG followed by an ambulatory EEG because, to be honest, the first one was so fucking traumatizing that I didn't want to put her through it.  That was...years ago.  >>HERE<<.

In fact...5 and a half years ago.  So I'm doing it again.  I got a script for an MRI and one for an EEG and I'll be doing it this time without Leslie's support, but Lily is in a LOT better place for this kind of thing now.  She'll still have to be sedated for the MRI, which isn't my favorite, but there's is absolutely no way she'll sit still to have her brain scanned for a half hour.

So the "good" thing is someone saw it, and we checked it out and she seemed fine.  And the other "good thing" is that now I can use the scripts to get a better look so that IF something is there...I can get her help for it.
this Lil patient is being so patient

I was at the ER from 1:00-7:00 on Tuesday to get those two prescriptions and that medical buy-in that she was "fine".  And Lily was somewhat stir-crazy, but she was good all things considered (having not really eaten since breakfast, they wouldn't let her eat until she had bloodwork done I think that finished up around 5.  So...that was a bit painful constantly telling her "just a little bit longer".


Recap:  Lily isn't sleeping much, and is becoming a woman.  In addition, she seems to have had a couple seizures at school.  I need help, but got some for after school if I can just figure out a way to get more sleep.  Doc says there could be a link between her seizure and her coming of age, and that could be scary, but I'm following up.

Unpacked.  For now.

Friday, February 24, 2017


I went to my semi-annual dermatology appointment today.  I'm moley.  It turns out that moles I THINK are dangerous are harmless and those I think seem harmless are malevolent.  So I go to the dermatologist and he checks me out twice a year just to be safe.  They take pictures with an ipad and then compare my moles today to my moles from the past and flag the changers.

I have this mole-ish thing on my thigh.  It's been there for years.  He said a name for it.  He said it's fine.  He always says it's fine. why I go see him, because I wouldn't have thought it was fine.  I told him so.  He said, "it does all the things we tell you to worry about, but it's still harmless.  It turns out it's genetic."  Well...if it's genetic. Nothing genetic could be a problem.

"These things save lives," he continued.  "People think there's a problem and they come to get them checked, and because they come in we spot something they might NOT have caught that ISN'T harmless."  So basically my thigh-mole-thing is a hero.

My dermatologist told me that his brother was a pilot in Iraq.  He told me that he asked him once what it was like being a pilot in Iraq and apparently his brother told him, "It was a target-rich environment."  He told me the story after he peeled the paper gown away from my chest.  In terms of moles, he said, "you're a target-rich environment."

Don't worry, this story ends happily.  He examined and catalogued my moles and had his assistant take some pictures, pronounced me healthy and told me I could get dressed and he'd see me in 6 months.

Writer technique...FLASHBACK!

When I started this appointment they asked me if I wanted a gown or just to take my shirt off.  Considering I knew he wanted to examine "all of me" I figured rather than sitting bare-ass on butcher paper I'd prefer the sparse modesty a gown could offer.  The assistant brought me a paper gown and I disrobed when she left, peeling the paper apart to find the arm holes.

"The opening goes in back," she said.

I put it on and looked for some way to pull the stiff paper closed.  There was a thin plastic strip, perhaps a half inch wide and 36" long that had fallen out of the gown and I attempted to wrap it around myself.  I could make the ends touch but there was no way I'd be able to tie it.  This was not my first paper gown exam rodeo.  I looked for eyelets on the gown...maybe it threaded through them.  There weren't any.  I tossed the strip on my clothes in disgust.

I gathered the gown around me and pulled it closed before sitting on the butcher paper and waiting.  "Please don't use cell phones while in the examination rooms".  Whatever.  I didn't though.

Writer technique...PRESENT!!

I crumpled up the paper gown and tossed it in the garbage.  I got dressed and grabbed the "belt strip".

I handed it to the assistant and said, "Explain yourself.  I'm relatively slender and I couldn't tie it, I guarantee you have bigger patients.  There is no wa-"  But she was already holding the strip out in front of her...and...LIFE HACK...She pulled it apart.  The strip didn't snap in half or really even seem to thin out as much as I'd have thought.  She handed it back to me, stretched nearly double.

At the look on my face she laughed delightedly.  "That's how you do it," she said.

I can't POSSIBLY be the only person who has failed to see the solution to the short-belt problem.  If I am, please feel free to laugh at me.  If not...use this life hack for your next appointment.

Tuesday, February 7, 2017

Lookin' Up

I've been doing a pretty good job of watching what I eat.  I've been doing an "okay" job of getting exercise.  I guess from my perspective any concerted effort to get any exercise is better than the complete LACK of that I was previously getting.  It's like Lizzy used to tell us (a dietician at work who gave us a 6 week brown bag series on nutrition)'s about making better choices. 

So I've been trying to get out and walk for fifteen minutes every day at work, but I haven't been as diligent at home.  I'm not beating myself up about it, I'm still eating much better, and I'm focusing on doing things that help my overall mental health, so if I don't get a walk/run in on the treadmill it's not the end of the world.

One of the things I've been doing is sampling vegetarian food choices.  I'm not going vegetarian or plant-based, or least not yet...but I'm just seeing what the dark side has to offer.  Since 90% of my dining is Asian, it's amazingly simple to just make the meat disappear and still have a great entree.  Other things I'm doing is attempting to limit my portion sizes to something more...reasonable.  I can eat a dinner sized portion of Hunan chicken, but really it's probably three full servings worth of food.  So I'm trying to just cut it in half and ask for a doggy bag for the other half so I'm not tempted.

I'm back where I was when my pants stopped fitting three weeks ago.  So now that I lost the six pounds I gained without even realizing it...and since I'm already in eat right and exercise mode...I'm going for the next five.  I think ten more total and I'll be content, but for now I'm taking it five at a time.

Myfitnesspal is limiting me to 1,750 calories today, which is actually not that big a deal to maintain, although I do find myself having to talk myself down from grabbing a snack out of the pantry, or at the very least, forcing myself to log that information into the app so that I can see how much damage I'm doing.  In some cases I end up going to bed with a little cushion (not literally, though I do use a pillow), in some cases I'll treat myself to a little something just shy of the goal limit, and in other cases I'll go a little over.

We went to visit my folks last week and mom made steak and brussels sprouts in a cheese sauce, and served wine...and then finished with a chocolate chocolate chip cookie sandwich with fucking marshmallow fluff in between.  So yeah.  Kind of hard to ALWAYS stay under budget.

Stress is less, I think.  Lily is still in the throes of some sort of metamorphosis that is not always super pleasant (like getting spit on or bitten, for example) but she's pretty happy and easy for the most part. 

Emma is more focused at school lately and I'm seeing her grades reflect that, and I've found there's an inversely proportional relationship between her grades and my stress level that has probably been my biggest single source of stress these past six months...yes...autism/money/election included.

My big "project" is done, and I'm eager to show you all what I was working on, but I can't until the recipient receives it, lest I ruin the surprise.  Now I have to pick some new thing to focus my creative energies on.  Room remodel?  Lamp project?  Drawing for Emma? 

I like my new foci, and I feel like they're helping me steer the boat.

Life is feeling good right now and I'd be smelling the roses if I hadn't contracted some sort of cold/flu from Lily and gotten a stuffy nose.  And I'm out of tissues at work.