Thursday, October 16, 2014

Treadmill

           Well, they weren't kidding when they said this was a supercold.  Feisty Pants is handling it well. But, but, but.... she is whiny and wheezy and achy and out of sorts.  Mind you, I know we have dodged a bullet on this one. Even a tiny bit worse would have meant an er visit, chest x-rays, and more than likely,  an admission.  And every day she seems progressively better.  It's just that we seem stuck on the O2/ fever treadmill.  FP either wheezes and pants when we try to take off the O2  or she randomly pops a temp thus eliminating the idea of going anywhere for five minutes, let alone going to school all day. 
               I feel terrible for her nurse, too.    The woman is sweet and kind and FABULOUS at her job.  And every night, we are calling her up and telling her not to come into work the next day.  It must be like winning a crappy lottery every night.  Or hearing the worst joke ever. ( Riddle me this, who's gonna get to sleep in but miss a day's pay, AGAIN?)  The school hired her through a temp agency, so I hope they can just send her to another assignment for the day.  Hopefully, without said assignment being so fabulous we lose her over it. (Does that make selfish?  Don't answer, I actually don't care...  I love the way that nurse works with my child.)
               I shouldn't whine too much either, really.  Feisty Pants is on the mend.  The torrent of goop coming out of her face is now clear, not scary,icky colors.   She is much more talkative (read that as bitching up a storm because we are tormenting her with our boringness.)  She won't leave the cannula on for more than 30 seconds.  These are all great signs in a medically fragile kid. If you have the energy to misbehave, you are feeling better.  Not being a pain in the tush is a danger sign.  They are either sick or plotting.  Oh, but I cannot seem to get anything done around here.  FP is literally tied to her O2 supply right now.  If she is tied to the house, so am I.  Normally I have no problem with that.  I like the idea of spending my days in my backyard or just strolling my neighborhood.   But the second the choice is out my hands, I turn into Feisty Pants and hate it.  What if I wanted to hike the Himalayas or walk to Macchu Pichu?  (You don't know. I could too want that.)  The work around just seems to be piling up too.  I swear the Universe thinks "Aha, she's NOT hiking the Himalayas this week.  Let's send  a million more emails that seem urgent until she opens them. And break something easily fixable, but time consuming.That way she won't be bored."
              It also doesn't help that weather has been strange all week.  Too hot at night too sleep with the windows closed.  Too rainy to sleep with them open. (It's OCTOBER, Universe, where are my chilly, creepy, ghostly nights??)  So I am tired and cranky on top of it all.  Poor Feisty Pants, she really is stuck in the house with miserable, cranky old farts.  She needs to get better and plot her escape.


Sunday, October 12, 2014

That Scary Time of Year

         Sigh, double sigh, effing sigh again.  Feisty Pants is sick as dog so now I am nervous.  I would have been nervous Friday, but I was way too busy. (Today is a little quieter so I have time to worry. ) She came home early from school on Wednesday.  A fever, but with no other symptoms. Unless you count crabby as a symptom.  I don't.  If I did, I would think we were all sick, all of the time.   We gave her ibuprofen and she would seem fine.  The motrin would wear off and she would cry. But that was all.  For 48 hours.  Friday morning she became mucus-y and goopy and even crabbier. So we called the doc, made an appointment for that very afternoon and then had to jam all our normal Friday stuff in the day somehow. (Grocery shopping, laundry, errands, etc.)  This doesn't sound like a big deal.  Have I mentioned we do not own a car?  (It's simply an extra expense that we don't need. We live in a small city so it's a luxury, not a necessity.)
         Since we were not sure how bad she is going to get, we felt we had to get our stuff done that we had planned. If she were to end up hospitalized, nothing gets done.  Sometimes you can tell an illness is going to be a doozy.  Sometimes you can sense it will not be a big deal.  This one is viral and a little unusual, so we had to hedge our bets. Sooooooo... We dragged Hippie Pants out her bed and nice warm apartment to come watch Feisty Pants and Cheweverything Pants extra early. We then literally powerwalked/hauled ass to do our errands and the grocery store, shopped, came home, and put everything away.   We then did as much laundry as you can in an hour and a half.  Grabbed a taxi and headed for the doctor's office.  Where our pediatrician was not in (Of course, why get sick when it's convenient?  That takes all the sport out of it.) so we saw one his partners who had NOT seen FP before.   To his credit, he did not freak out.  He did however, take a long time- normally a rare and FABULOUS quality in a doc but damn it made the afternoon longer.  Then all over the hospital complex to hit the pharmacy and do what errands we had there. Then waited an hour and a half for the cab back, because obviously we had time to kill not having anything to do.  Then stuffed more laundry into the machine, stuffed Goo into bed (he had been up 26 hours at that point), stuffed FP's oxygen onto her face a million times.  She tends to be a tube puller when cranky. Oxygen, g-tube, feeding adapter, IV's, it's all a tube to be yanked and thrown when she's annoyed.  Oh, and babysat Dinky Pants so his parents could get some stuff done that they didn't do because they were at my place babysitting Feisty Pants.  He's crawling/almost walking now, so he's almost quicker on all fours than I am on twos.   And does not approve of the flavor of puppy food we get Cheweverything Pants.  And told us so in no uncertain terms.  Cheweverything Pants, for her part, does approve of the flavor of laundry detergent we use, which she told us by trying to eat half of FP's clothes.  Fridays are just party time at our house.
            But now, its the weekend, and we managed to get most of our crap done without causing too much mayhem and bloodshed.  Feisty Pants has a nasty, nasty cold. The doctor referred to it as a supercold.  And because it's Feisty Pants, put her on an antibiotic.  It sounds counter intuitive to treat a virus with an antibiotic, but not in FP's case. It's often not a question of IF she will develop a secondary infection from a virus, but when she will get it.  This tactic will hopefully keep her out of the hospital.  And, thankfully, this antibiotic is not one the ones that gives her "digestive issues".  (Most do.)  The doctor, very kindly, warned us that this virus seems to take about a week to clear maybe longer in Feisty Pants' case.  That gives me a time frame in which to NOT worry so much if she seems to take forever to get better.   And everyone has been warned we are plague house (That is what that big x on my door means, right??)  so we probably won't have a lot of people in and out.   If we do, they can't bitch if FP coughs all over them and they turn into zombies.  So, it's now quiet, and we have time to sit around and watch Feisty Pants wheeze and sneeze and cough and complain that everything sucks. And I have time to sit around and wonder what "supercold" means- EV- d68? Ebola? RSV? (Not likely, we have had that one- you can't get that again.  Can you?  Are they sure?)  Ahhhh well, nothing for it but sit around catch up on episodes of the Strain and Walking Dead.  Now, those viruses seem to suck.   Good thing they're not real.  (Are they? Are they sure?)

 


        

Monday, October 6, 2014

Synonyms for Boring

        Well, Feisty Pants had a busy weekend. We attended a baby shower this weekend.  She was thrilled.  Last weekend, she had some weird bug -a tummy bug, we think, and so was stuck at home. Anything is better than being stuck at home .  Heck, she got stuck in an elevator (only for a few minutes) which she found funny.  Anything that freaks out an adult is a great thrill for her. Dinky Pants was there and created some mild mayhem as only a nine month old can do.  That delighted her even more.  Best of all, Feisty Pants has made some leaps in her speech as of late, so the mom to be, who is a friend of Hippie Pants, was there to be awed and amazed by FP's new verbal skills.  In her mind, all those presents and games about babies were just filler between elevator adventures and showing off and cake.
        Sunday was our typical Sunday.  Football and cleaning. Seemed to take forever but we finished and no one cried or threw up or had a temper tantrum.  The kid was pretty good too.  And that was our almost exciting weekend. (She says just one fun thing alllllll weekend doesn't count.)  Now it's another Monday night. As I sit here attempting to type this on my phone, Feisty Pants is sitting here dozing on the couch beside me. Missing one of her favorite shows (Spooky Hollow-it is not Sleepy Hollow she says, because there is nothing sleepy about it. )  But it is Monday night, she had a busy day at school and then massage therapy today.  Not a bad end to a busy day and a busy weekend.
           And that's the point of this post.  There a million ways you are forever different from other parents when you have special needs child.  But sometimes  more importantly, there are a BILLION ways that you are just like everyone else.  We love, eat, argue over football, hang out, embarrass our children with our oh so freakish existence.  We bore them and nag them and annoy them with our presence and horrible rules.  Just like every other weird, boring, embarrassing parent.
           And on this boring Monday in boring October,  when everyone is boringly well, a night of listening to my eleven year old dozing on the couch is absolutely boringly awesome. Tonight boring is a synonym for beautiful.

Saturday, September 27, 2014

Whistling Past the Graveyard

              So, it's fall now.  Part of me is doing  cartwheels and waiting with maniacal glee for cooler weather and colored leaves and Halloween.  Part of me is holding my breath to see how Feisty Pants will handle the annual leaf mold/cold sharing/mildew wheezing season that is October and November for her.   I cannot complain too much yet.  Until she was six, it was a guarantee that she would spend most, if not all, of October and November in and out of the hospital.  Her record best is 10 days on a ventilator for pneumonia, five days regular admission after that only to be discharged and 48 HOURS later be sent back into an ER, helicoptered AGAIN back to the same hospital that had just discharged her for another 14 days on a  ventilator due to a virus she picked during the first hospital stay.   The very first Halloween she was not hospitalized, she came down with swine flu.  (We all did- that was a fun week.) 
              But although, I do tend to worry about colds and flu and such, I try not to freak out.  I've learned the hard way not to turn into Monk/Howard Hughes.  I used to try to sterilize everything in the house, but that's a fool's errand.  You cannot really control everything.  The chemicals irritate Feisty Pant's lungs and make her more likely to get the very problems we are hoping to eliminate.  So we caught our breath and rethought our plans.   No harsh chemicals.  Hand sanitizer for those who touch her. A round of flu vaccines for everyone who spends a lot time around FP every year, and don't bitch because I don't care.  Leave your really smelly artificial perfumes at home, please.  (Really smelly natural ones are ok.) It works for us, it works better for her.  I sleep easier at night.
              BUT BUT BUT -and there is always a but- every time I turn around there is some head line from the worst case scenario crowd that seems to want to give a special needs mom nightmares.  SARS, bird flu, swine flu, RSV, Ebola, and now, EV-D68.  It's often hard to see which ones are important and which ones are simply headlines that sell well.  I get why we all do it.  News is a BUSINESS after all and they are all competing for our attention.   Fear sells well.  It seems urgent, even when it isn't .  Fear is seductive and self aggrandizing.  (Why, if everything is out to get me, I must be important!)  SARS was terrible for those who got it.  Bird flu is much ado over very little.  Swine Flu sucked to get BUT we all sailed right through it.  (Sort of, in a whiny, cranky, sit around in your pj's and shiver for a week kind of way- but NO respiratory complications.) RSV is actually scary.  To you and me, it's just a bad cold so we don't really take it seriously. To the disabled or infants- it's a life threatening illness.  (And the cause for the second half of that marathon hospital stay I mentioned up there in paragraph one.) Ebola is awful, but containable and treatable if we all get off our collective butts and do what needs to be done.  That leaves EV-D68.   This fall's flavor of scary.
             So, as a public service and to sort of whistle past the graveyard as it were, here is a very non-scientific overview of what we know.  I will post a couple of links at the bottom to actual facts and figures.
             Enterovirus-D68 is respiratory virus that can quickly spread through droplet contact.  Think sneezing, coughing, spittle, unwashed hands and unwashed surfaces.  In its mild form it is a cold.  Runny nose and slight fever.  In its severe form it causes wheezing, asthma attacks and breathing problems.  Children and teenagers are most likely to get it.  (Once you've had it you build an immunity to it.)  It is most prevalent in summer and fall.  We are now seeing an outbreak that is quickly spreading and is confirmed in New York state. (Where we live.) The best defense is common sense.  Wash your damn hands.  A lot.  Don't share tissues, plates, utensils, cups etc with someone with a cold.  (Most people don't.  But most people aren't under five- and those little buggers share EVERYTHING) Teach your little ones some basic sniffles hygiene and nag them about it.  Use hand sanitizer and clean all those counters and desk tops.   If you get a cold- STAY HOME.   SERIOUSLY, you're not toughing it out.  You're risking someone else's health. Please don't do that.  If you get a cold and it seems to be affecting your breathing, get a hold of your doctor and do what needs to be done.  My guess is this is one of those viruses that, if severe, is treated by supportive care- oxygen, nebulizer treatments, steroids, until it runs its course. Which should not be too scary if treated quickly.  Links are below.  If you need me or Feisty Pants, we'll be in the backyard watching leaves, coated in Purell.   If you come by, please use hand sanitizer or you will subject to a cleaning by Cheweverything Pants.  That alone should kill anything.  Lord knows, her breath can.  You've all been warned.

Center For Disease Control- EV-D68

NY Stat Dept. of Health -EV-D68


          

             

Monday, September 22, 2014

Yay!! Fall!!

                  Since today is the official last summer (Would the last one out of the pool please remember to turn off the frigging heat?!?) and tomorrow is therefore the return of sweater weather and cute boots and thank goodness, autumn. (Yay! a round of pumpkin spice anything please.) I thought I would post a few fun fall crafts.  They are easy, cheap and in no particular order.
 
1) Coffee filter leaves- no color in your yard yet?  No problem- make your own version of nature's best trick.  You will  need coffee filters, markers and a spray bottle filled with water.   Simply cut out leaf shapes out of the filters, get the kids to color them with markers (the more colorful the better) and mist with the water.  The colors will run making for beautiful leaves when dry.  You can even use these for the next craft...

  2) Leaf wreath- you will need fall leaves (real  or make your own), circles cut of anything stiff (manilla folders, cardboard,paper plates,card stock, anything really), and glue.    Simply let the kids glue the leaves onto the circles and hang when finished.  VERY easy and quite beautiful.

3) Fall trees- you will need glue, paper, twigs, and either leaves or tissue paper.  Simply glue the twigs to the paper as the tree trunks and branches, glue on the leaves (or tissue paper cut into random shapes) for the leaves.  These are actually quite pretty.   You can spray on spray glitter for a frosty effect.  (You could actually do that with any of these crafts.)

4)Fall sensory jar- you will need a jar with lid. ( Any somewhat large clear jar with a lid will work. Just make sure you can get the objects in the jar) plastic fall themed items- buttons, beads, plastic leaves or flowers (you can easily take apart a plastic floral spray from the dollar store) just think in fall colors.  Some glitter. ('cause what doesn't need some glitter?) and glue for the lid.  Simply fill a clean jar most of the way with water (you could add a few drops food coloring if you so desired), add the leaves, beads, buttons etc.  And some glitter. Glue the lid on. (You should probably do this one, grown up.)  When the glue is dry, these make great calming toys for kids, especially kids with sensory issues.

5)Bagel bird feeder ring- (You can use pine cones too, if you have any)  You will need a bagel (or each feeder ring), peanut butter, bird seed, and string to hang.   Put the bird seed in a large bowl or cake pan for this one.   Simply slather the bagel (or pine cone) in peanut butter, then roll in the bird seed till completely covered.  Tie the string to hang and hang from a nearby tree.

6) Pumpkin spice cocoa- (Yup, I went there.)  Simply make any cocoa you love.  Add a tablespoon of canned pumpkin and a dash or three of pumpkin pie spice (or just wing it and add cinnamon and a dash of ginger and nutmeg)  Save the rest of the pumpkin in your fridge to add to your coffee, chai tea, more cocoa, whatever.

 Happy Fall everyone!!!!

Monday, September 15, 2014

What a Pain

                    Sigh.  So, Feisty Pants has been extra, extra feisty today.   She's been making a concerted effort to work hard and be good lately.  And goodness knows, that is WORK for her. No one in our family has ever been known for obedience or compliance.   But, today, sigh, today she has spent  the day oh so obviously trying to be good but not quite making it.   By the end of the evening she was literally screaming in her feeder seat for an hour straight.  We couldn't find anything wrong.  It's not too hot.  We couldn't find any cramping.   Her tummy seemed fine.  We gave her tylenol to be sure.  (When she is cranky, she automatically tells you everything hurts- including eyelashes, toenails, hair and eyebrows.)  I think perhaps she just had a case of the mondays and needed to blow off some steam in a primal shriek sort of way.  For an hour straight.   Lucky mommy and Goo, she sang us the Lament of Feisty Ones everywhere.  Not everyone gets to hear that rare folk song.
                   But, it did get me thinking.  With kids as tough as Feisty Pants it is hard to suss out pain.   And when FP is frustrated, every thing is pain to her.  So what do you do when you can't find the cause or soothe the boo-boo or it's simply taking forever for the tylenol/ibuprofen/heroin to kick in?  Distract, distract,distract. So I thought I would pass along the great distraction tips I've picked up from the bazillion peds wards we have hung out in along the way.

1) A warm bath/shower.  There aren't enough words to describe how soothing this is.  Personally, I think it hits a primal floating in the womb nerve we all never lose.  The warmth is relaxing and helps unloosen tension and muscle spasms.  You can even add a cup of epsom salts for the magnesium.  It will help the muscles relax if sore and an promote sleep. Or a bit of eucalyptus oil/herbs for sinus issues or whatever cold they are all sharing at school this week. 

2) Massage- GENTLE, forget all that rough crap you see on tv or in spas.  Those people went to school to do that safely.  But a gentle massage is soothing and may help release toxins from the body.  The act of touch alone is necessary for all kids.  Use some coconut oil with a few drops of lavender oil/chamomile oil and watch the kids melt.  This one is FABULOUS for a cranky baby or toddler.

3)Music- (the great distractor!!) pick a beat to match the mood you want to produce.  Catchy pop tunes for an upbeat mood.  Soft lullabyes or singer/song writer love ballads for soothing.  Put it on and sing and dance for your kid.  Who cares if sound like a frog or look like a complete dork??!?  You kid won't judge that much, and later, I guarantee they will remember fondly that you were willing to dork out just for them.

4)Bubbles- I bring these up a lot BUT thats 'cause they are awesome.  They are quiet and distracting.  I don't even care if we get them all over my floor.  It will easily mop up and then I have a somewhat clean floor for a change.  Besides bubbles don't usually hit the floor  here.  Cheweverything Pants is sure they are aliens and must protect Feisty Pants from them by eating any she can find.  Feisty Pants find this HILAROUS.

5) Ice- if it's a bruise, bump or strain, ice is a sensible idea to begin with.  It's also great on bee stings and bug bites.  But here's the kicker, sometimes ice works best as a distraction. Kids tend to play with and it keeps them occupied.  And it makes them feel like they are doing something to help themselves thus giving them a sense of control over the problem.

6)Hot water bottle/warm rice bag- great for tummy aches or ear aches.  The warmth is soothing and again, there is the idea of control. Which is very calming

                      So, there you go.  Some quick down and dirty tips on how to not lose your mind until the moment passes and the pain reliever kicks in.  For the record, Feisty Pants made it through her awful torture of dinner.  Snuggled with me for little bit while complaining no one ever listens to her then cuddled on the couch with Goo.   She is now perfectly content watching some sci fi move about "a cool guy with robot finders (fingers)".  That must have been the problem all along.  Not enough robot fingers.

Tuesday, September 9, 2014

Therapy

               I was originally going to make this post about what a crazy week we are having.   Feisty Pants is back in school.  Therapy has started up again.  We have a snowstorm of paperwork to fill out.  And a bunch of doctor's appointments (they tend to come in waves).  And the grents came up for a surprise visit this weekend.  Grents is how FP pronounces "grandparents".  So we are crazy and tired and underslept and overscheduled.   Or as we call it, life.   But eff that noise, I want to talk about therapy.
             When Feisty Pants was born she went without oxygen for about 10 minutes.  That is an eternity.  Most don't survive.  Of those who do, we were told that most babies with that bad of a traumatic brain injury are "neurologically devastated".  In fact, I was told, "you need to know you are likely taking her home to die". (She's eleven and a half years old as of yesterday. All you pessimists can go suck it.)  But the one silver lining was this advice: "Get her into therapy NOW, it's her only shot."
               So, that is what we did.  We brought her home at six weeks old.  By eight weeks, we had her in therapy.  I have learned over the years to be a complete glutton for therapy.  Physical therapy, occupational therapy, visual therapy, speech therapy, massage therapy, music therapy,  and when we can, aquatherapy.  I would do hippotherapy if I could arrange for it. I've even learned to stomp my feet and throw a fit to have therapy when she is in the hospital. 
                So, what is the upshot of all this?  Well, when we first brought her home, all we knew was that we THOUGHT she could hear.  (not swallow, or see, or feel, or understand)  Within a few months, we knew she could hear, we knew she see some but not all colors (not movement), she definitely had feeling (I mean as in sense of touch, not emotions.)
                  Now, eleven years later, we know she's smart. Whipcrack smart.  Her hearing is better than most people's.  Her muscles rebel and don't obey but not due to lack of will.   And her vision has been an amazing journey. First, she learned to see blue and green.  Then she began to exhibit signs of seeing sloooow movement.  Then we found she could see outline and shape.  And then sat at that point for several years.  And I would have been okay with it.  But about 6 to 9 months ago, she began to refuse her glasses.  This has gotten worse over time to the point where she will not wear them at all.  In fact she insisted they made things worse.  So, back off to the low vision specialist we went.  That was this morning.  We got up early.  (Or stayed up late, in Goo's case.) Climbed into a cab that smelled  like a cow with a bad nicotine habit.  And rode way too far for anyone's comfort.  To meet with her doctor who listened carefully to everything we had to say, and began what is a routine exam for kids like mine.  (Can you see these stripes?  How about these ones?)  Five minutes in she looked at us and said, "I am not kidding. I have goosebumps.  This is astounding."  Feisty Pants has really bad vision.  But it has improved at a rate no one thought would ever happen.  And we really have no idea how much better it can get. 
                    And, THAT, boys and girls, is what this has all been about.  All the therapies, all the work, all the crazy schedules, and all the fighting with my stubborn feisty one who hates to cooperate with any boring adult.  Because, instead of not knowing and fearing what the future will bring for her, we sometimes get to sit around and not know, but HOPE, what she damn well might be able to accomplish for herself.  And that hope is a better high than heroin.  A bigger rush than adrenaline.   It's like college graduation and falling in love and eating dark chocolate and winning the lottery and fireworks all rolled into one.  Therapy is the key to ever achieving that zen like bliss.  
                   We even got to have a riding off into the sunset moment.  (Ok- it was a noonday sun, but who cares?) As we climbed back into the smelly cow of a cab, Feisty Pants looked me dead in the eye and said "told you".  Damn right Feisty Pants, you sure did.