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.

                         

Friday, September 5, 2014

Bath Seat Blues

               Okies, so this post is shout out for anyone with info.   Feisty Pants is getting bigger and has become hard to hang on in the tub.   So now we are looking for some adaptive equipment.  But it's a tad complicated.   Allow me to explain.
              When we bought our house (a 1925 two story, four square, EJ house) , it had been adapted for the elderly man who had lived in it previously.  Read that as the bathtub had been removed replaced with a step in shower stall.  A small shower stall.   After we had Feisty Pants, it became apparent that this would not work for us.  We needed  a bathtub.  She has spastic CP and could use the occasional soak in warm water.  Besides no shower chair fit in our little shower.  An insurance program helped to cover the cost and provided us with a walk in bathtub.
              It's awesome.  It worked great for her. It has a built in seat and she could sit on my lap and we could exercise her legs or massage her back. It has worked well for the last 8 years.  BUT now she is almost 70 pounds and hard to hold as she squirms and giggles and is full of soap.  So we need to find a bath seat that fits a walk in tub.  Regular shower chairs will not work.  They need more floor space than my tub has.  A potty/shower chair (yes, that is indeed a thing) doesn't fit the space.  What we need is basically a bath lift.
              A bath lift (think along the lines of a pool lift or ski lift chair) would work perfectly.  Even more importantly, we think we know how to get it funded.  BUT- and there is always a but (sigh), when researching them on line I seem to have hit a snag.  (And I think I get only shot at this type of equipment and then the insurance says forget it. )They all give a lift of about 22 inches.  The height of a regular bathtub.  Which I do not have.  I do NOT NO NOT want to remodel my only bathroom again.  So, I turn the universe at large, and if you are still reading this , you random lovely internet person.  Does anyone know if this type of lift:

 
Will work with this type of tub?:
 


Hit me up the comments, (or FB -search for Mikki Chalker of Binghamton NY)  any info would be awesome. Thanks. Peace.

 

 

 

Sunday, August 31, 2014

Thanks

                     It's been a while since I did any kind of post about being grateful.  When I started this blog, I thought if I could throw a post in about gratitude every so often that it would be a decent thing to do maybe I would start thinking along those lines and be a better human being.  Apparently I'm just not that nice of a person.  Sigh.  I really should not have to remind myself to do this once in a while.  But it seems I do.  So here goes, my latest overdue gratitude list.
                     First, a belated shout out to my daughter's now former teacher.   I wanted to send a note at the end of the year because after three years of educational bliss, Feisty Pants is moving along to the next teacher.  But I got busy.  And I am awful. You cannot have any idea of what an amazing difference you have made in her life.  My daughter is notorious for refusing to cooperate with basically, anything she does not damn well feel like cooperating with.  Nazi villains in movies could not get her to talk.  Her first three years at school, she refused to say a single word.  The school had pretty much given up on her.  We got her into your school and your program and you had her talking in three days.  And excited about school.  And excited about learning.  You are Annie Sullivan and Mr. Rogers and Obi Wan Kenobi all rolled into one.  When Feisty Pants becomes an evil overlord, we are cloning you first.  Thank you. No wait, I don't usually call people by their real names (I feel it's kinda not fair of me to tell someone else's story) but in this case, I want to shout it from the rooftops.  Thank you, Jane Tilleman, for being one the best thing things that has ever happened to my child.

                    Thank you, and happy friendship anniversary (frieniversary?) to Awesome Pants.   I cannot believe I have known you thirty years.  Thirty. Frigging. Years.  You really are one of my tribe.  Anybody else I have known longer and still hang out with happen to be related to me. When I met you , you were a shy but feisty baricua straight outta Brooklyn.  Having just fallen of the turnip truck on the way into town, I was in awe at your poise and openness.  Thirty years later you have become a true wise Latina (in the words of another wise Latina) and I am still  a little bit in awe of you.  Thanks for being there and being you. 

                  Than you Feisty Pants, for your new obsession with caramel ice cream.  (We make our own ice cream here and let the kids pick the flavor.)  When I drag my cranky mom butt out of bed in the am and come downstairs for coffee, it's pretty nice to be able to throw a spoonful a caramel ice cream in it and have one decadent mother of a cup first thing.  That was clever of you to think of and makes my day just a little nicer. Thanks, kiddo.

                  Well, that wasn't so hard after all.  And I really do feel more peaceful and zen like.    So, thanks to anyone out there reading this.  I really do appreciate all of you too.  Peace. 

Tuesday, August 26, 2014

Scars


                Well now,  we have had an eventful afternoon.  Feisty Pants must have been wishing for something exciting to happen and it did.    One of our local hospitals has a movable mammogram.  Basically, it is a big Winnebago with a mammogram machine inside it.   They use it for outreach and screenings for breast cancer (duh).  Today, however, it was more like something out of the Road Warrior.  (Mad Max and the Mammograms of Mayhem?)  As it was driving past my house, it hit my cable and phone lines and snapped them in half.  It even pulled the junction boxes right off the side of my house.  Shook the whole neighborhood.  And scared the dog.  Feisty Pants was thrilled.  Then she realized we have no cable.  She is no longer thrilled at all.  Even a bike ride did not cheer her up.  Not even the two trucks and three workmen trying to piece it all back together are interesting her anymore.  Normally she likes tv but is not so attached to it.  But she is eleven, so the minute she is told she cannot have something she is dead certain that is ALL she ever wanted in her whole life.  And right now, that is tv.

               I have to say, I know how she feels.   Normally, I could give a rat’s fanny about the phone.   I have hard time paying attention to what is said to me (as opposed to what I see.)  So phones are work.  But the minute I cannot call 911 from a landline, I get very,  very nervous.  Losing electricity to run her machines (food pump, pulse oximeter, suction machine, nebulizer, etc.) is a seriously big deal.  But having those machines in your house automatically comes with a contingency plan.  (Legal forms and everything.)  Not having access to 911 is a bigger deal.  I have a cell but with an out of state number and no idea if that changes how 911 operates for me.  I don’t want to find out the hard way.  Forget the fact that she is not sick now.  Forget the fact that it’s summer and that’s a GOOD time of year for her, health wise.  Forget the fact that we haven’t had to call 911 since she was five.  All those horrible nights of running hellbent to call 911 and start cpr come flooding back in a horrible rush of Dear God, What if??

             That’s what this post is about I guess.  The fact is that there are some things that will be forever different for you once you are the parent of a special needs kid.  This weekend there was an accident on my street .  A drunk driver slammed into a telephone pole.  I heard a bang then what sounded to my groggy ears like my kid crying (it was the driver screaming for help outside) and then heard my husband call 911. I flew downstairs is an adrenalized rush only to have Goo tell me to be quiet before I woke up Feisty Pants who was sleeping and breathing peacefully.  It has been years since we had that kind of crisis.  But it never leaves you.  There are a million joys in parenting any child.  Mine is no different in that respect.  But there are a million ways it is different.  Some of them you’ll be proud of.  Some of them you won’t notice until someone else points them out.  And some will just be there, like a scar you hardly notice until it gets cold (or the phone goes out) and then it aches in ways you forgot you knew. Not much for it though, but to borrow a cup of determination from your kid and roll with it.  Trust me, they’ve got tons to spare.