Wednesday, July 1, 2015

The Dead Zone

            We are in the dead zone at the moment.  The regular school year is over.  Summer school doesn't start til next week. Kids who are disabled often go to school year round, Feisty Pants included. ( A great opportunity I think should be offered to most kids.)  So, since we are in the summer doldrums, we do what most other parents of feisty ones do and try to cram in all our appointments and errands and what-not into these two weeks or the other three week break at the end of summer.   To that end, today was our second trip to Syracuse this week.  A colossal waste of time, if you ask me, but the Universe did not ask.  So we crawled out of our comfy house waaay too early and went to hear one more doctor look worried and try not to say she did not have a frigging clue what to tell me. 
             Sigh, it's so frustrating.  For the doctors, for Feisty Pants, and for cranky parents who, frankly, would rather NOT be shlepping to freaking Timbuktu for no damn good reason.  I don't mind the schlepping, if it produces results.  We used to take Feisty Pants to Philly twice a year.  It took a whole week, no one got any real sleep.  (Try to imagine your entire family, sleeping and working in shifts trying to live in ONE room for a week) BUT.  It did mean that FP got the coordinated care she needed and did NOT end up in the hospital for about six months.  And then we did the trip again.  But, New York, who seems to be trying to starve the care of the disabled, will not let us take her to Philly anymore.  I am NOT kidding.  Early Intervention and specialty care are literally being slowly starved of funds.  Those involved in making the decision to do that while they trumpet New York's tax breaks  and budget surpluses on tv while claiming poverty when it comes to schools and health care for the disabled deserve a special place in hell.  And it does NOT make any good sense money wise.  It was cheaper to take her to Philly twice a year than it is to pay for ONE hospital stay.  We are now up to three or four hospital stays a year.  They are paying for four years worth of care every year to save a few cents on the dollar on an asinine fee quibble with the right place.
             The state even recognizes that Feisty Pants does not have a lot of options.  They stated that there was ONE ( a whole whopping ONE) hospital in New York state capable of handling her care.  And we tried that hospital.  They made several recommendations but insisted on a sleep study before attempting anything with FP.  Then failed to schedule said study.  Then, when we called repeatedly, apologized and said it would be scheduled.  It wasn't. Then they stopped returning our calls altogether.  They even did NOT return a call to Feisty Pants' pediatrician when he called.  (Some professional courtesy.)  I suspect, but do not know for certain, that it's because we turned down their one recommendation that would have been very lucrative to them. 
              So, now we are stuck returning to a place that does not want to admit they can't really handle her.   But knows they cannot really.  And I know they cannot really.  And we all smile and shake hands and try to muddle through best as we can.  And they grimace and say "We really cannot provide the kind of coordinated care we would like to offer her, but we are way too small."  And the state says "continuity of coordinated care would be nice, but isn't really necessary."   Right wing pundits say, "America's health care does not need changing.  We have the best health care in the world!" 

              And I say, "What the f%*# good does having any health care system do if the people who need it are not allowed anywhere near it?!?"

Monday, June 22, 2015

And the clock strikes twelve

              I was going to make this post about Feisty Pants' review of binge watching a season of Game of Thrones (which I thought be funny) but her entire view of it was summed up in, "Not enough dragons"  so no. (And don't bitch at me, she doesn't see that well so she misses most of the stuff she shouldn't see)  Then I was going to get her to review a movie or two but she summed up Captain America as "Ok, but not as pretty as Thor," and another movie as "fine until it bored me," so now I gotta come up with something else.  Perhaps I will make this post about very effing twelve years old she is. Of course, then I have to come up with spelling out the sound of her eye rolling.
              In some ways she is still just a tiny thing.  She is officially short.  (Diagnosed with "short stature" due to the cp and repeated infections which stunted her growth.)  She is rather thin.  Cp, again.  She absolutely cute and feisty which seems to add her "aren't I just a pixie" demeanor.   Her speech is garbled and her face, while beautiful, is not always expressive to an outsider.  Which again, makes her seem younger.   But she is tough as nails.  And in some ways, a little world weary.  (How many emergency helicopters have you ridden on?  How many times has an ER doctor popped a hole in your shinbone while you watched him?)  Feisty Pants even has the dark sense of humor of someone who has been there, done that, got the stitches to prove it.   And she is most certainly twelve.  Superheroes are now judged on whether they are pretty on top of super.  Side eye is now an art form.  She was seen holding hands with a boy at school.  And another boy gave her his phone number.   Which she promptly brought home and used as a reason why she needs her own facebook account. ("Not fair.  Can't talk phone.")

               So now, we are distinctly looking down the barrel of puberty, whether we like it or not.   And whether her father is ready for another teenage girl or not.  (At least, so far, this one does not slam doors)  And just to drive the point home, today she asked her father to buy her a beer.  Those people on the tv ad were dancing on a beach and they looked like they were having fun.  When told NO, she said she would simply ask someone else to do it, because summers are made for parties.  There is no finer example of  an incredible combination of naivete and too cool for the universe diva-tude as a twelve year old girl.  And now Feisty Pants has got in spades.  May the Universe have mercy on us all.

Monday, June 15, 2015


           Okies, people.  So I was writing about the heat.  (It is too writing and NOT whining, shut up.)  But then we were rudely interrupted by a lung infection.  And then my whining about that. But now I am done digressing.  So, since no matter how much I hope and wish, winter is not coming back for like, forever, I figured I just give in and look up some yummy popsicle recipes online.  I refuse to turn my oven on if it's over 80.  Some days it's even too hot to grill.  So how does one load healthy food into the fam without living on yogurt and salads? I could live on them but the rest of the inmates here seem to think they need something different after a few days of "but THIS salad is completely different".  
            Personally, I just resort to lying. Or more precisely, to neglecting to tell them exactly how healthy the "junk" food I have "compromised" on really is.  (Fink on me and you will all be on my list) I have no regrets either.  They think they are having a dessert for dinner.  I did not have to risk spontaneous human combustion.  These are actually pretty healthy considering we are having popsicles for a meal.  So here some yummy ideas for your "omg, it's too hot to even contemplate cooking" meal (or even just want a healthy snack.) You will need either a popsicle mold (You can find them everywhere this time of year.) or just use freezer safe cups. The trick with cups is to cover tightly with saran wrap and then poke the sticks in. The saran wrap will hold it up. (mostly)  You can  even use a pretzel rod for a stick if you don't any popsicle worthy sticks lying about.  You could also freeze them in small tupperware dishes and call it Italian ice.
              Basically what you will be doing is making a smoothie and turning it into a popsicle so if you have a better recipe than these, have at it. Or better yet, stick it in the comments and show off your smoothie cred.  The basic instructions are chop ingredients, mix in blender, pour into molds and freeze.  How many they make depends on your mold size.  By the way, if you can sneak some veggies, by all means do it.  I recommend starting with some carrot or cucumber.  Yummy, healthy and hard to detect.  I can no longer do that as someone here finked (You still suck for that GOO) and now they all watch me like hawks.
Chocolate Banana:  eight ounces greek yogurt (plain, vanilla, or banana would work), four ounces almond milk,  four medium bananas (the riper the better), 2 ounces nut butter (any) and two tbs cocoa powder.
Pina Colada: eight ounces greek yogurt (lemon, coconut or pineapple), four ounces pineapple juice or crushed pineapple, 2 ounces flaked coconut
Tropical Bliss: eight ounces greek yogurt (any flavor -I would recommend passionfruit), four ounces canned tropical fruit (or fresh, whatevs), four bananas
Apple Pie: eight ounces  vanilla greek yogurt, four chopped apples, 2 tsp raw honey, 1 tsp cinnamon.


Monday, June 8, 2015

And now it's raining pollen

                 So sigh, it's been a couple of weeks since I posted.   It's not due to laziness or lack of discipline, I swear. ( Seriously.  Don't listen to anything these so called people who live here say.  They are not to be trusted with their opinions at all.  Hell, they demanded to be fed daily. Like every single day.)  Actually Feisty Pants had decided to celebrate the fantastically high pollen levels around here by getting sick.  REALLY sick.  First,  she developed some sinusy, bad cold deal and was stuck at home on oxygen for a week.  Then she seemed to get better and went back to school. But she wasn't actually better.  Just plotting new and interesting ways to brew pneumonia.  So just when we thought we were all done, boom, in the hospital for a week.
                 She developed a fever Saturday morning.  So off to the doc's we went. That's a story in and of itself.  To make a long story short don't you dare act like I am the one in the wrong if don't answer your own answering service when I know you are open for urgent visits and then get all haughty when I show up and DEMAND that you see my kid. We all know that I don't have Muchausen's, Feisty Pants really is medically fragile, and frankly, the only difference between our views of my being a bitch are that I think I deserve a medal for it.  It is not my fault your answering service did not follow protocol and told me you were closed when I knew you were not. It was you or the ER and I did not think she needed the ER.  Those places are germ factories and we only go there when we have to.  We expected to be sent home with a different antibiotic and were all surprised when she was admitted.  But such is life with a feisty one.  It's always surprising in both bad and good ways.             
                But four days of IV antibiotics and three of IM antibiotics (read that as a shot in the hip) when the iv failed have put FP back on the good side of illness so we are home and back into our routine.  Back to school and therapy.  Back to being completely fed up with those boring old farts she lives with.  Mastering the art of the side eye when your annoying parents spout absolute nonsense.  Mastering the art of scoping out cute boys at school.  Discovering music that no one else has ever been cool enough to listen to no matter what they claim. (Holy Cannoli, there is a song entitled Puff the Magic DRAGON!  Who knew?) You know all the important things in life when you are twelve.
                   And here's to hoping we old farts can back to what passes for normal around here.  Catching up on cleaning and yard work that lay neglected while we were gone.  Explaining to the critters that we really are still in charge.  Catching up on sleep (please oh please oh please).  Maybe even writing a post or two.   Well, here's to hoping anyway.


Wednesday, May 27, 2015

It's the Time of the Season

              It's the time of the season for heatstroke apparently.  Or whiplash, depending on the day.  One day the overnight low is 30 and I have to cover my plants.  The next day (literally!) it's 84 and humid  and we are all dying from the heat. Next week- locusts. But don't worry, at least we will have some shade from the swarm.  So while we are all digging out our a/c's and finding where the heck our flip-flops have gotten to over the winter, I thought would write a post on heat related illness.  Trust me, heat exhaustion SUUUUUCCCCKKKSS.  You hurt and everything feels awful and you throw up a lot.  At best it is miserable.  It can be very serious.  If you are disabled or elderly, it is downright dangerous.  The best way to deal with any heat related illness is to manage to avoid it in the first place.  Keep cool.  Stay hydrated.  Stay indoors when the sun is at its hottest.  Turn the darn a/c on.  Can't do that?  Hit the nearest air conditioned public place.  Window shop at the mall. Go to the movies. Head for the public library.  Or find someplace to get wet- public (or private, if you are lucky) pools.  Splash pads at your local park.  A sprinkler in the backyard.  Water will cool you down quicker than air and is always a perfect ploy for a cranky kid (or grown up for that matter).
              But, say all that didn't work and the summer has become the kryptonite to your feisty one.  What then? First, learn to tell the difference between heat exhaustion and heatstroke. You may be able to deal with heat exhaustion at home (BUT FIRST, CALL THE DOCTOR ANYWAY).  If you suspect heatstroke, get your feisty kid's tushy to the ER stat.  (or grandma or yourself) Seriously, don't muck about.  Heatstroke can be fatal.  It really is that dangerous.
Symptoms of Heat Exhaustion: thirst, weakness, headache and irritability, nausea and/or vomiting, muscle cramps. increased sweating, cool/clammy skin, elevated temperature under 104 (103 in babies)
What to do: CALL the doc.  Right away.  Then hydrate and cool.  Cool baths, cool showers, get where it's cool.  Follow the doc's advice. This is even a good excuse for Hippie Pants' favorite dinner- popsicles and ice cream sundaes.  Get cool and stay cool. Tylenol for the headache.  (Which is a bitch, trust me)
Symptoms of heatstroke: severe headache, weakness, dizziness, lethargy, rapid shallow breathing, vomiting, flushed hot dry skin, can lose consciousness, temp over 103, possible seizures, may not sweat.
So, there, now that I am done yelling at you.  Stay cool. Stay safe. Have a great summer in whatever level of Hades this heat season turns out to be.  If you get bored, swing by.  We'll invite you in for a dinner of popsicles and whatever we don't have to heat up.


Wednesday, May 20, 2015

For sale, CHEAP

          I love my kid. I truly, truly do. Forget whatever romance movie, hallmark card, valentine's day crap you learned about falling in love with your significant other/emergency contact person.  You do not know what it's like to really fall in love until you look into your child's eyes for the first time.  Feisty Pants is awesome and sly and amazing.  I even love her sister, Hippie Pants, who is funny and kind and smells good all the time. Having said that, if I don't frigging get a break from the bitching soon, I am running away from home. Or selling them at a yard sale cheap.  If you buy them both, I will throw one slightly used and dented Goo for free.
              Sigh.  So Feisty Pants is sick again. Not scarily so.  It's merely an upper respiratory infection/sinus infection/really bad cold.  She is just sick enough to be stuck at home on oxygen and antibiotics.  And mad about it. Everyone else on the entire planet is out riding their bikes.  But no, not her.  Everyone else on the entire planet is going to her cousin's most awesome birthday fete and FP has overheard her mean parents wonder if they will make it or not. Who cares if she is still on oxygen and just exactly what are they implying about a week of antibiotics and they know what that means, hmmmmmm?!?  And she is being so cooperative right now.  FP has even managed to clearly verbalize a new sentence. "I sick. Leave alone!!!"  She is even interspersing this with "Come here. Nownownownow!"  Just to show how hard she is working at communicating.  But is she getting ANY respect for all her hard work? No, just unreasonableness from those old farts. Why should she get dressed, not pull her feeding tube, not whine twelve hours straight, not sing opera at 3 am??? How dare we torture her with boredom and pants and food?!?   So what if she is sick and needs the rest, sleep is for kids who get to do things and she NEVER EVER EVER gets to do anything fun. EVER.  And her head hurts.  So please hold her.  But don't touch her because she is sick and you are all annoying right now.  Why aren't you holding her?
            Sigh, this is one of the paradoxes of disabled kids.  The determination that keeps them going through illness, disability and often pain, is the same stubbornness that makes their parents softly bang their heads against the wall.  Nothing for it really.  You just gotta learn that it is not personal, it shall too pass, soon enough,  the kid will be feeling better, happier and finding new and more exciting things to bitch about.  Until then there is always coffee, chocolate, and tequila.  On second thought, forget the tequila.  That may be part of how we ended up with these kids anyway.

Tuesday, May 12, 2015

Cranky Mom Blues

          So as I type this, we are sitting in the middle of a dentist's office watching Feisty Pants act as if she is being waterboarded.  She just loves the dentist. Goo is busy wrestling her into a good position where she is accessible to the dental assistants and yet cannot slug/pinch/kick them.  At least in theory. In reality, it's more akin to wrestling a squid, a squid that can bite, pinch, kick, thrash and screech.  I perform my usual oh so helpful task of guardian of the suction machine, holder of extra paper towels, and temporary office decoration.   This is a great dental office, so they will be kind and quick and not even complain when her aim is true.   And yet no matter how long it takes, it certainly feels like eons while she thrashes and shrieks.  
             I have not much to do, except sit here feeling unhelpful.  So I have time to think of all the things I wish the universe has but doesn't. Like changing tables for kids bigger than 35 pounds. (Go ahead try to change a kid in pull ups when they are 12 years not 12 months.  Bathroom floors are disgusting. I won't put my purse on one, let alone my kid.  FP passed getting changed on my lap 11 years ago.)   Toothpaste and fluoride treatments in flavors my kid likes. (They make vodka in whipped cream flavor.  Why not fluoride?   You can get latex gloves in banana flavor. Why not toothpaste?)  Mostly I sit around in moments like these and wish the medical profession as a whole researched cures instead of treatments.  I long for the day when there is either a stem cell treatment for CP or, at the very least,  a quick solution for the spasticity that contorts her muscles and limbs and makes her life painful on top of difficult.  I also wish for a roomba like coffee maker, that would follow me around and dispense lattes on command no matter where I am, kinda like a labrador crossed with a barista.  (We try to schedule appointments first or last thing so we give up less sleep.  This one is unbearably early.  I am so cranky I don't even like ME right now.)
              Really, I am just whiny.  It's a dentist appointment not an ER visit.  She is not even close to sick.  They are not hurting her.  Feisty Pants is merely pissed at the world and not afraid to let us know.  But some days just seem longer than others.  In a few hours, we will be home, done with this for at least six months and almost caught up with our daily routine.  But I do want those who don't travel down life's roads with a special needs kid to know that sometimes it is a wee bit tiring.  So, please, have a little mercy on us. Kindness doesn't cost a thing and saves us cranky parents a lot of bail money.