Sunday, March 27, 2016

And the party continues

         Ain't no party like a Feisty Pants party cause a Feisty Pants party don't stop.  Until five o'clock in the effing morning.  Sigh. Can you tell there is a vacation this week?  If you ask most parents of school age children, they will admit it's just easier when they are in school.  Sure, everybody's got to get up the morning but you trade off that for getting stuff done.  I wasn't normally like that.  Hippie Pants has always been part vampire/bohemian/nightwalker and would sleep until noon if you let her.  Summers and vacations were a breeze.  I always got up before she did and had time for a cup of coffee before having to deal with another human being.  And she woke up like me.  So there was a gradual acknowledgement of any others and it gives you time to acclimatize to the fact that other people exist and one might have to deal with them occasionally.
            Feisty Pants, however, is NOT like that at all.  I blame her father.  When left to his own devices, he wakes up early and cheerful.  Honestly, he should be in a zoo.  Or at least in a cage, safely away from normal people.  He might inflict his cheeriness upon them. Feisty Pants is the same way.  Early to bed and early to rise is her motto.  And get out of her way, she has things to do.  And she does, indeed insist on being quite chipper in the am, just to be spiteful.  Except when she is on break.  You see, when you cannot move or see properly, you brain does not get the everyday workout it naturally craves.  (That's why blind people tend to rock and sway.  The brain is craving input.)  When Feisty Pants is on break there is no physically therapy, no occupational therapy, no visual therapy, no speech therapy, no gym.   And right now- no aqua therapy or massage.  All we have this week is music therapy. So even when we try to entertain her, her little grey cells are bored to tears.  In the past week, she has been to two parties, gone shopping three times, cooked with me, and watched a gazillion movies.  And today is Easter.  Yet, she is still so craving brain stimulation that she is now staying up until the wee hours of the morning. Seriously, we have seen 1 am every night.  And three and five am are not unheard of.  The only people who should be awake at three am are vampires and cat burglars.  I could sort of see it (she is thirteen after all) if she then slept til noon.  But alas, no.  Seven am is her preferred wake up time and that is written in effing stone.  So now FP is bored and cranky.  I would kidnap her therapists and teachers if I knew where they lived.   I would not be convicted by a jury of my peers.  All I would have to do is get one parent of another feisty one on that jury. 
          I can do nothing but take solace in the fact that it is the last day of break.  Easter dinner is over and everyone is pleasantly stuffed full of yummy goodness. The dishes are done (thanks Goo!).  Feisty Pants has had her shower and is in her pj's.  Zombies are about to start shuffling across the tv screen.  Hopefully she will pass out before the cock crows.  If FP falls asleep at a reasonable hour, it will be a true Easter miracle.  Hope your holiday was lovely and chocolatey.

Saturday, March 19, 2016

Party Time

        So Feisty Pants and I and the rest of the traveling circus are attending a benefit today.  So I am sitting here eating a veggie burrito and listening to a jam band called the Groovy Boys. I feel like I am just a few bad decisions away from college.  (I do not care what you all think, I loved my mohawk.) Feisty Pants is licking frosting off Goo's cake and bouncing to the music.  I am sitting in the corner and writing this.  Because I am just too cool that way and in no way a nerd or anything. (I am too cool. Shut up...)  
         Feisty Pants for her part was thrilled to find that a manicure is one the prizes being raffled off and stuffed the box for it after conning half the family into buying her raffle tickets.  Dinky Pants seems to think that cake and cookies magically appear in old people's hands because they keep handing them to him.  We have a second band taking the stage now (actually the third but we had to wait for Hippie Pants to finish work so we were late.) This new band's singer is a girl and that seems to have enraptured the mini rocker.  The person for whom the benefit is being thrown (a family member battling cancer) feels very loved right now, and perhaps a bit tipsy, so if that doesn't make this a big success nothing ever will no matter much money it's making. Or should, for what it's worth.
          Which has got me thinking, of all the crazy, seemingly illogical ways we humans deal with illness and tragedy and disaster, this one is not the worst. We often pull back, not knowing what to say or do and fearing we will offend.  We sometimes cut off the ill or suffering person, instinctively fearing contagion that really is never forthcoming.  But, this, when we instead circle our wagons and embrace our tribesman or, amazingly, the stranger at our door, this is all of us at our best and brightest.  When we start to think of us instead of me.  When we help instead of harm.  And best of all, when we help with love and food and music and dancing. This is why we are having this physical experience called life people.  This is the kinda thing that gets my tired tushy out of bed in the morning. This is beautiful.  I wish you all love, peace, and when necessary, a tribe that brings the burritos, jam bands and raffle tickets 

Tuesday, March 15, 2016

Cerebral Palsy Awareness

       March is Cerebral Palsy Awareness Month.  For those of you, dear readers, who do not know, Feisty Pants' main diagnosis is Severe Spastic Tetraplegic Cerebral Palsy due to Hypoxic Ischemic Encephalopathy due to Traumatic Brain Injury at birth.  (It gets all those caps because I tread warily around mine enemies.) Since Cerebral Palsy is such an intimate part of our lives and thus the cause is near and dear to my heart, I thought I would make this post about spreading awareness of the condition and post some helpful links.
      Cerebral Palsy is the term used for several neurological disorders that appear in infancy or childhood and cause movement disorders and muscular issues. Basically, they are disorders of movement and posture caused by damage to or abnormal development of the cerebral cortex of the brain (the motor control area).  It is nonprogressive (will not get worse) and up to now, has no cure.  (C'mon Universe!!!) Unlike what is actually often believed, only 5 to 10% is caused by birth trauma.  (That is what happened in Feisty Pants' case.)  The other causes are possible abnormal brain development, premature birth, brain injuries in the first few years of life. You can also add seizures and serious infections to the list too.
       What happens in CP, and this is a very basic overview, is that the brain cannot lay down new patterns over the basic primitive infantile movement reflexes properly. The pathways have a harder time forming, if they do at all. It leaves one with rebellious muscles and reflexes that will not obey one's command and make normal movement difficult. I'm probably understating this.  There are two kinds that I know of personally (know more? add it in the comments) spastic and athetoid.  Spastic involves the muscles contorting and contracting when they shouldn't.  FP cannot, for example, lift an arm with out her head turning, due the strength of her infantile reflex that we are all born with.      Athetoid usually involves an overflow of information travelling the nerves- seen in people whose cp leaves the movements looking jerky or random like.   

        There is, so far, no cure but treatments and therapies are developing all the time. (C'mon stem cells!!!) The best hope right now is lots and LOTS of early intervention.   Therapy. Therapy. Therapy.  (Oh and btw, insurance people who are cutting back on therapies right now, there is a special place in hell for all of you.  EVERY SINGLE ONE OF YOU.)  If you need or want to know more  start with these links.  (Know any other links? Add them in the comments. Knowledge is power, people, share the wealth.)

United Cerebral Palsy- national organization page

Handicapped Children's Association- serves as Greater Binghamton Area's local UCP chapter

Family Resource Network- a great source for kids with disabilities

Parent to Parent of New York State- great resource for networking  (Not in NY? google your state's version)

Monday, March 7, 2016

The Birthday Checklist

              Okies, it's Feisty Pants' birthday tomorrow so let's make sure we got all our ducks in a row, shall we?
1) A close relative with an awful and contagious virus sure to keep EVERYBODY on their toes.
    Check! (actually we have two, no point in screwing around here.)
 2) Two children, ages two and under, who should be NOT contagious but preferably still really cranky by birthday dinner.
   Check! (see above)
 3) One Feisty Pants who, while not sick, is just slightly under the weather so we don't know if  it's allergies, or pms, or brewing an illness, or hell, just fed up with old farts who oh so obviously have no understanding of adolescence or the world or boys or fun or anything
       Check. Check check checkcheckcheck!!!
 4) Three dozen bizarre, free form, hippie cupcakes because mom has no muffin tins and is so unreasonable about making a Texas sheet cake for dinner for 6 because she's cheap so she had damn well better make those cupcakes!
      Check!
 5)Three dozen cupcake papers, half of which will say trick or treat, and the first person who bitches gets to wear a cupcake shaped unicorn horn.
       Check!
 6) Two containers of cream cheese frosting because that homemade crap Mom slaves over is gross and icky and she only makes it to annoy Feisty Pants with her cheap, inferior, homemade imitations.
      Check!
7) Two annoying last minute doctors appointments that are necessary but oh so inconvenient.  One needs to preferably involve big ass needles that mom does not like.
     Check! (and a giggle from Feisty Pants who thinks it's swell that someone else got poked for a change.)
8) What seems like a gazillion presents to wrap and will take Feisty Pants approximately a minute and half flat to unwrap and smile at and then get bored and want to watch tv.
     Check!
9) One thirteen year old girl who giggles and kvetches and makes us crazy but who was prophesied to not make it out of infancy, then not to be "in there", and then about a million other dire predictions that were total bullshit and so every birthday is a damn triumph and worth all the other hassles combined and multiplied a billion times over.  CHECK!

Happy Birthday, Feisty Pants!

Thursday, March 3, 2016

RSV (aka WHAT?!? ACK!!!!)

              Ok, so this post was supposed to be about March being CP awareness month.  And I have that post half written, so maybe I will get around to finishing it for my next post.  BUT this post is going to be my version of written panic attack.  RSV is going around.   I saw a few cases of it mentioned on facebook, but they were physically far away (like two states away) so other than feeling bad for the kids and parents involved I was calm as could be.  HA. HAHAHA.  That virus is a nasty bitch and has reared its ugly head here at home.  Dinkypants has got it now (and is in exile) and I am halfway to freak out mode. 
               So, in order to NOT be one those melodramatic parents we all know and love, I have decided to whistle past the graveyard as it were and try to write to something sensible and help spread information instead of panic and flop sweat and germs.  Notice I said TRY.  Be kind, people.  Anywhooo....
                RSV- respiratory syncytial virus is a sometimes nasty respiratory infection whose symptoms usually mimic a cold. When Feisty Pants had it, the pulmonologist  at CHOP referred to it as the "nastiest chest cold". It is very prevalent and most people have had it before they were five. (Some doctors estimate by two years old.)  It's a virus -so no antibiotics and the only treatment is supportive care.  Think chicken soup, humidifier, tylenol, all the Mommy things you do when your kids are sick.   Most people have a miserable week or so and then it clears up. The problem comes when it causes a secondary infection OR when it hits the very small, the elderly, the disabled, or the immunocompromised.   Then it can be deadly.  For Feisty Pants, it meant a scary helicopter ride to Philadelphia, ten days on a ventilator, two IO's (that's when a doctor pops a hole in your bone because you're too sick or dehydrated for an IV) and one more holiday in a hospital.
                The symptoms to look out for are: fever (usually low grade), snotty or runny nose, dry cough, sore throat, mild headache.   In severe cases the symptoms to watch for are: fever, severe cough, wheezing, rapid or difficult breathing, the child may not want to lie down (especially on back), bluish tinge to skin or lips.   If you live in the Southern Tier (or anyplace you have heard it is going around) and see the first set of symptoms, go to the doctor.  They can test for it and rule it out.   If you live anywhere and see the second set GET TO AN ER STAT.  People at most risk for the severe form of the infection are the very young (under six months or under a year with an underlying health condition), the elderly, babies in crowded childcare settings, adults with an underlying lung disease (such as COPD), anyone who is immunocompromised.    
                The virus is a droplet contact virus that enters the body through the nose, eyes and mouth.  It can live on surfaces such as doorknobs, counters and toys for hours.  Now is the time to bathe in purell.   And wash your damn hands.  A lot.  A person with RSV is most contagious in the first few days but can spread it for a few weeks. (And THIS is why we need paid sick leave, people)    
                Most of time, RSV is mild and a minor bump in the road along life's journey, but when it gets nasty, it gets nasty very quickly.   If you have any reason to suspect you or your kid has it, do us all favor.  Get it checked. Stay home. (Seriously STAY HOME) Take care of it and help those little ones feel better.