Groundhogs Day

            Ok, so now Hippie Pants has decided that it is not fair for her sister to have all the fun.  So she has come down with the flu and, because secondary infections are kind of our thing, pneumonia. In fact, most of her household (roommates, friends, etc.) have come down with the flu.  And Hippie Pants had her flu shot too.  Of course with the rates of efficacy  this year, I am not truly surprised.  Just worried.

            So if you need Feisty Pants or I, we will be under the bed, coated in Purell, pretending to be groundhogs.  Or maybe we will just hide in the fort she has decided we need to build in our living room.  To be honest, if I thought it would help, I would turn the whole house into one big blanket fort.  I am already scoping out foil hat designs, you know, just in case.  We definitely WON'T be at Disneyland.   That is apparently ground zero for the Zombie Apocalypse.  Really, people, vaccinate your kids.  What you are saying when you don't is that the idea that there could be a health threat that would MAYBE, POSSIBLY  affect your kid's life is worth some one else's, say, MY kid's LIKELY death due to measles or pertussis. Or that your child dying of measles or diphtheria or pertussis is better than living with autism. Forgive me if I find that possibly offensive. Make no mistake, these illnesses are dangerous.  People die from them. That's why vaccines were invented. If it makes you feel better, for the record, I took my kid (you know, the one with the brain injury and therefore an already compromised neurological profile) to a neurologist when she was just tiny and asked specifically about vaccines and neurological risk.  His advice was to give the T-dap (tetanus, diphtheria and pertussis)  shot in separate doses instead of combined and give the pertussis one month later than the other two.  He also said not to worry about the mmr (measles, mumps, rubella) at all.  If you are worried, try that. (If you are really worried, take a look at all the pesticides we feed our little ones on a daily basis and decide which is the bigger threat, just saying.)

        You'll have to forgive me if I seem cranky, but every time I turn around someone is throwing up or coughing up blood (Hippie Pants split her throat coughing)or just quitting and doing a runner.  Sigh.   Even the big snow storm failed to make an appearance around here. And now even Goo is saying he feels "off".  Great.  If I poke my head out from under this bed and see my shadow, I just KNOW there will six more weeks of flu season.

Plagued

             Alright, Universe, WTF?!?  Seriously.  WHAT. THE. HELL.  Feisty Pants is finally back in school.  This was supposed to be her first full week back at school. (Full-ish, it was only a 4 day week, but I will take what I can get.)  She is still cooperating for now.  This honeymoon period won't last forever, you know, Universe.  Soon, she will simply revert back to her ever mischievous super-villain ways and spend her time subverting the system and every adult around her.  You know THAT.  So, why oh why, have given my child the plague AGAIN?  This is simply ridiculous.  She has had at least one tummy bug a month for about four months now.   Has Binghamton suddenly become the landlocked equivalent of a cruise ship?  Have we spawned a hell- mouth, Buffy style, and the demons around here are the demons of gastritis?  Knock it off already.  Geez o petes, Feisty Pants is still on anitibiotics from the last illness.  Seriously, you need a time out, Universe. No more tummy bugs for anyone until you learn to scatter them about more fairly.  Can't you go hit rich people who can afford a day off or Boko Harum or some fundy cult of extremists somewhere?

              Sigh.  At least she is still on antibiotics, so I am hopeful that this will be a minor bump in the road and not a precursor to another pneumonia.  But she is now, yet again, cranky, miserable, and stuck at home with the old farts who want to sadistically bore her to death.  Just ask her. FP will tell you all about how ebil we are.  And she can prove it- Goo made her put on pants this morning and she isn't even going anywhere.  Worst of all, we keep making her EAT when she obviously does not want/need to.   Forget the fact that its only pedialyte (sort of, I make my own- no artificial chemicals that way) and she hasn't thrown that up.  She is sure it will make her nauseous (even if it hasn't yet) and we are only doing to be mean.

             By the way, if you want or need to abuse your sick kiddos with homemade pedialyte (or everyone has the plague and no one wants to go to the store), here are three quick versions to tide you over until you get to the soup and crackers convalescing stage.

Version one- (I like this one but no flavorings are added, FP is tube fed after all.)

1 cup coconut water
1/8 to 1/4 tsp high quality sea salt.
mix well.
That's it- simple and easy peasy.

Version two-(slightly artificial but good for kids who need a flavoring or else they balk.)

1/2 cup hot water

3 and 1/2 cups cool water (or cooled ginger tea)

2 and 1/2 tablespoons sugar
1 tsp jello mix
1/2 tsp sea salt
Mix jello, salt, sugar into hot water until dissolved. Stir into cool water.  This can be kept in fridge for a few days.

Version three-

2 quarts water (again, you could add ginger tea to this)
2 1/2 tsp sugar
1/2 tsp sea salt
1 tsp baking soda
1 cup orange juice
Mix together and serve.  This also can kept in fridge for a few days.

Finally...

           Feisty Pants FINALLY made it back to school today. It has been over a month since she last was there. Sigh.  First she was very sick and in the  hospital.  Then she was on oxygen for five days after being sent home.  THEN there was Christmas vacation (and the annoying 24 hour tummy bug from hell)  Then the nurse quit on us, so I spent last week bitching and moaning to anyone who would listen to get that little fiasco solved.  THEN Feisty Pants, deciding that we were not truly receiving our fair share of things that are a pain in the tush, came down with a sinus infection.  So the poor kid has been stuck with Goo and I 24 hours a day for the past month. And during that whole time she only punched one nurse. (She did smack her twice. ) I am counting that as a win.  Hell, I haven't smacked anyone in the last month, so I want a frigging medal.

          Nothing for it, but back to the grind.   It was actually nice to be somewhat normal (well, normal for us anyway) today.  I managed to almost catch up on laundry.  The hubby almost managed some real sleep.  Hippie Pants has spent the last two weeks attending the trial of the man accused of killing her friend (and her boyfriend's relative) and it is almost over so maybe, just maybe, she, her friends, boyfriend. and his family can finally begin the arduous process of closure and healing. (Every time I felt sorry for myself this last month, I just looked next door and thought "wow, I'm a spoiled brat".)

          Feisty Pants, for her part, was thrilled to get the heck outta Boringville and was actually sweet and cooperative in school today.  I have no idea how long that will last but I will take what I can get. She will eventually get around to testing the nurse's resolve but I'm going to just happily accept whatever reprieve she gives me.  I am beginning to think I could work this angle. ("Straighten up, Feisty Pants , or I will ground you from school."  On second thought, no, she would just call my bluff.)

          Best of all, it's COLD.  Truly cold.  As in below freezing so no mildew cold.   So FP will have an easier time with her breathing.  And in turn, we will all get a little breathing space.  We will catch up errands and appointments.  Catch up with all those chores that we have let slide. Catch up on emails.  Catch up on missed therapies. Maybe just stop and catch our breath.  Finally. 

        

Monday, all day long

                  So, today was supposed to be a good day.  Feisty Pants was supposed to go back to school.  Between being sick and Christmas break, she has missed almost a month now. We seriously were counting the minutes.  Not in a "why is my kid a pain in the tush" way, but in a  "Good Lord, how much therapy is she missing" way. Her health and frankly, her future, depend on her therapies in no small way.  This was a Monday I was actually looking forward to.    So imagine my consternation when I find out ONE HOUR BEFORE HER BUS WAS SUPPOSED TO PICK HER UP, that we no longer have a nurse.   And I only found that out because someone violated policy and texted me to tell me.  And don't ask me, I won't fink.  Everyone is starting to play CYA and pretend they didn't know BUT they did.   (This is an endemic problem within the world of the disabled.  People get very wonky over the treatment of their loved ones and unfortunately every institutional response involves, in part, on clamping down on information which is absolutely INFURIATING and makes you all look like you cannot be trusted, ever.)  I know darn well they did, because when we tell the bus driver she wouldn't be going to school this am, someone remarked, "Why didn't Nursefinders (the name of the agency, yes I WILL name some names) call you two weeks ago?"  So the gossip mill already knew WHEN the agency knew.  Why didn't I????  Said agency is claiming they had no idea we were without a nurse, but I don't believe them.  They either didn't bother to tell me, or thought they would have a new nurse or were simply avoiding dealing with someone who was not going to be happy with them (me).  I also informed them that I don't want just any nurse and I am NOT happy.  They said they would call me right back.  That has not happened yet either.  I doubt it will. 

                  I now have to call two separate schools and bitch at them.  One, our home district, and say "WTF, people?" Because if they knew, I want heads to roll for not informing me and if they did not know (possible, if not likely) I want this to bounce back upon the nursing agency.  I want accountability.  Things fester in the dark.  That's exactly why there is so much paperwork involved in the care and education of the disabled. If you all don't want to drown in paperwork, then you need to be HONEST even when it's difficult, hell, especially when it's difficult.  If you cannot be aboveboard at all times, then you should have to drown in the paperwork.

                  Then I have to call the school she attends and say"NOW what do we do?!?".  I assume they will probably be more helpful.  It's not their legal responsibilty to provide the nurse so, they can be a little more relaxed about the whole process  (read that as they are not ones possibly getting sued if I really throw a temper tantrum and lawyer up because a "Free and Appropriate Public Education" is indeed a legal right for my child) and will probably give me an honest opinion and some good off the record advice. 
                    But before I do that, I am going to call my child's service coordinator (that's the social worker) and see what advice she can provide.  And she is not in her office for another half an hour.  Poor woman, it's not even nine am, school has hardly gotten back into session and she is going to have to talk some parent out of a bell tower.  They really don't pay her enough.  Hell, I would be blowing up her cell with texts, but for the fact that somehow my computer has eaten her contact info.  (I am guessing the Universe didn't want her to deal with me before coffee.)
                     So, here I sit.  Waiting.  Writing this, so I have a record of what has transpired so far, in case I do have get officially nasty on people. Trying to recapture some moment of zen and failing.  Listening to Feisty Pants complain that Dr. Who is not on and why can't she see her friends, anyway?  It will more than likely work itself out.  No one really wants to violate my kid's civil rights.  And I am a major pain the ass when necessary. But, why oh why, did the Universe want to spring this me now?  I have no bail fund...  It's gonna be Monday all day long.

A Christmas Toast

       You know what's annoying about Christmas?  No, not that.  Or that either.  Or that.  Shuddup already, it's my blog.   What's annoying about Christmas are all those cutesy awful song parodies that are everywhere.  I don't mind the good ones.   Christmas is meant to be merry and sometimes merry=silly, so why not a good bit of parody or satire?  It's cheesy ones that stretch the idea thin and  sound awkward that bug me.   But after eight days of FP in the hospital.  Followed by two days of frantic prepping and shopping and packing to leave for another eight days. A five hour car ride. Followed  by DinkyPants, Hippie Pants, Feisty Pants, and Goo then getting yet another frigging tummy bug.  I am a bit frazzled.  Frazzled enough that, now, Christmas nearly being all wrapped up (snort, see what I did there?) I am in just the overtired, burnt as toast mood to truly appreciate a good (bad) parody.  So here you are, Merry Christmas.

On the twelfth day of Christmas my true love gave to me:

12  dozen cookies designed to stick to my hips (that I ate anyway) 

11 batteries needed

10 days of antibiotics

9 cousins visiting

8 days of FP's IV

7 goldfish swimming (early Christmas present for Feisty Pants)

6 goldfish survivng

5  kids hyped up on candy

4 kids who then got a tummy bug (the candy looked terrible a second time)

3 days with no sleep

2 cranky parents

1 Feisty Pants who refused to wear pants.

 

And to all a good night.  Hope your holiday found you healthy and happy.  And may all your New Years be merry and bright.

 

Wheeee?

               In case you've never had the fun vacation of a kid in the hospital, it's best describe as a roller coaster.  Or a bi-polar episode, maybe.   Lows, highs, and a bit of whiplash.  Let me illustrate the last 48 hours.

Tuesday:                       

                When I woke up this morning,  I fully expected feisty pants to be home by this afternoon.  So I didn't go in to the hospital (her father has been staying this time).  I stayed home and cleaned and tried to catch up on things so that when she got here we could have a fun evening watching whatever FP wanted. But at 10 am no doctor. Same at noon.  And 2 pm.  By five, when the doc did come in, the nurses had noticed a pattern of low sat rates and funny heart rates.   So no discharge.  And I could have blown off the house and spent the day with her. Sigh.  Instead, here I am waiting for tomorrow with only Google and WebMD to keep me company.  Now I am concerned about her brain tumor/ebola/prostate cancer. Great.

            But that's kind of the way it goes with a feisty one.  All the every day trials and tribulations seem magnified because it's more complicated juggling life when you have to add dozens of doctors appointments and medications and therapy sessions.  Then factor in physical logistics,  emotional logistics (some feisty kids find every day situations overwhelming in a myriad of ways), and, my favorite, sleep deprivation.   Now, just to be thorough, throw in all those fears that come nag at you at three am.  What if she is getting worse?  What if they want to ship her out?  What if we have to skip Christmas this year?   How much snoring and farting can an 11 month old dog do at 3 am, anyway?  (Maybe that last one is just at our house.)

 

Wednesday:

                      So after trying to keep busy and get some holiday stuff done (What day can be a complete waste if it ends with washing chocolate out your hair?) I tried to get up early and rush in to stare at my kid and worry in person.  Only to find her looking normal.  Her sick version of normal, but normal nonetheless. Sat rates still suck, but holding on the O2.  Cranky as hell, but that won't change until the say the magic word (discharge).  Heart rate down a little bit.  Still a very sick kid.  But not dangerously so.  And still willing to argue a little bit with the doctor.  (Nuh-uh, she is too ready to go. Just that no one asked HER.   And btw, owowowowowow her IV site is just KILLING her, maybe they should take it out???)   So, now I can breathe. 

                      And, that's also the way it goes with a feisty one.  Just when you're ready to face whatever.  You've girded your loins and screwed your courage to it's sticking place.  Put on your best brave face and waited for someone in scrubs to ruin your day/week/year/life.  They don't.   You catch your breath and reboot.  And get a little break in the storm.  And the day seems blissfully uneventful. And my three am demons get a little smaller and less loud.  If only I could also dampen the sleeping noises (and smells ) of Cheweverything Pants.
                          

In which the Monster finally blinks

           Which philosopher was it who said, "if stare into the abyss long enough, the abyss stares back into you"?  Prolly Nietzsche or one those fun dour ones.  I get it's mostly a poetic way to say, " stop dwelling on the negative there, Debbie Downer."  But damn, it sure feels like we've been staring into the abyss alllll weekend long.  Sigh. Feisty Pants is actually doing much better.  Better enough that they are discussing paroling her soon.  Which means she is also now better enough to complain 24/7 about being tortured and imprisoned, umm, er,  I mean hospitalized.

          So, hopefully, we will be home in time to have a somewhat organized Christmas. And find the cat, who has escaped and is sulking under our back porch because the only two humans he likes haven't been home since last week. Maybe actually finish a cookie. Or wrap a gift. My in-laws will be doing the holiday after the holiday, thank heavens, so I might actually be prepared by then. (This is, at least, the lie I am telling myself.) My folks are used to me and will just roll their eyes and think, "We'd knew she be all hurry up and never done".  Everyone else will have to roll with it if we show up in dirty sweats with half made gifts,  looking like refugees from  some very smelly disaster.  

           I used to try to still be as close as possible  to whatever passes for normal when Feisty Pants was younger.  Foolish of me.  I was tired and over stressed and just made myself ( and everyone else around me) miserable when I never met an impossible illusion of what I thought was organization.  Now, eff it.  We try to show up.  On time. And be somewhat reasonably presentable. Preferably with no weird biological substances in our hair .  Doubly preferably with no one screaming. Triply preferably with none of the screaming being aimed at me. Anything else is a fun goal but we make no promises. And anyone who does not understand is just gonna have to deal with it and/or suck it. I don't care which.  This year my Christmas gift is having her home and anything else is simply details.  So if we are too messy, too loud, too chaotic, too casual, just consider us the embodiment of Christmas present.  The children who accompanied that spirit were poor homeless waifs so we already look the part.