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.

Saturday, August 23, 2014

Rainy Days and Saturdays

         Ahhh rain...  I used to LOVE rainy days.  And storms.  And wind.  And most of all, snow storms.   (I am told this an adhd trait.  Nonsense.   I like to think it simply means I have a discerning soul.)  But rainy days are not quite the friend they used to be.  Rain and humid/damp days mean MILDEW, especially in my 90 year old moldy, musty house.  And that means a sneezy, wheezy Feisty Pants. Which in turn means a grumpy Feisty Pants.   It does not help that it also means no bike rides for FP, who has watched every interesting show EVER made for tv and played with any toy worth playing with and done everything fun to do EVER and now has nothing to do or watch or see.  Plus, by some hideous quirk of fate, her parents are the most boring people who ever existed.  Even the dog has died of boredom. (Read that as spent the day snoring on the couch.)  Bubbles are not bubbly enough, paint is not artsy enough, and tv sucks until 8 PM (When the new Dr. Who comes on).  Eight pm is, however, CENTURIES away and she will been driven mad with boredom by then.
             So, all of this horrible, terrible, obviously terminal ennui has sent me running the interwebs to scour for a cure or, at least, some interesting ways to keep Feisty Pants from succumbing until the sun comes back or the Tardis arrives.  I am passing some along in no particular order in case you are mean and boring too.

1) Bubble wrap painting:  This one's been making the rounds on facebook.  You simply need paint (probably fingerpaint will work best), large sheets of paper and bubble wrap.  Wrap bubble wrap around feet and /or hands (use a bit of tape to keep in place) squeeze some paint onto the paper and let the little ones go to town.  I wouldn't do this on a carpeted floor, but we are philistines with all hardwood here so we like this. If you're fussy, try spreading out an old sheet on the floor first to keep the mess contained. 

2) Edible tinkertoys- For this all you need are marshmallows and pretzel sticks.  You can throw in some berries if you really want to be fancy.  The kids simply poke the sticks into the marshmallows and build to their heart's content.  They can even eat their buildings.  You could even substitute cut fruit and cheese cubes for th marshmallows and call it the most fun lunch ever.  

3) Fridge Art- I got this from my grandmother who had nine kids and over thirty grandkids.  By the time I was around (I am the youngest girl of my generation, second youngest overall) she knew every trick in the book.  Once a month, she would hand me a box of crayons and have me draw a scene on the side of her fridge. (Some theme pertaining to the month)  I got the thrill of drawing right on an appliance.  (It's like being asked to go ahead and draw right on the wall!) She got a quiet afternoon with no whining.  If you use the cheap waxy crayons, it's amazingly easy to clean with windex. 

4) Recycled crayons- you will need broken crayons and a lightly oiled muffin tin.  Have the kids gather up all the broken crayon odds and ends. Make sure to remove any of the paper labels.  Simply place the pieces into the muffin cups. (They don't need to be filled.)  Let the kids decide on color combos, etc.  Then place the muffin tins in a large cake pan.  Add hot (stove hot, not tap hot) water to the cake pan and let the crayons melt together.  When cool, simply pop out the new crayons and have fun.  You could even simply place the muffin tin directly into the oven and bake to melt, but I am unsure at what temperature. I'd guess 250 and keep an eye on them, but I am guessing here. If anyone reading this knows -hit me up in the comment section.

                    So there you go, that should get you through at least an afternoon.   If these don't work you, you can always send your kids over here to listen Feisty Pants complain about how they don't know anything about boredom because she is stuck with us and we are the most borrrrring people who ever existed.

Monday, August 18, 2014

Monday Morning

                      Oh dear lord, do I have a case of the Mondays today.  sigh....  Feisty Pants, by contrast, is giggling and happy.  Thank goodness.  Yesterday she spent three hours straight whining and crying.  (Headache- it took two doses of ibuprofen and one of tylenol to finally beat it into submission.) It's her first official day of break and there is a Dr. Who special on to keep her occupied.  I, however woke up to Goo yelling about her g-tube leaking.   ALL. OVER. THE. FEEDING. SEAT. AND. FLOOR.  Her food is a special high calorie formula- read that as incredibly thick and sticky. Five phone calls to the doctor later we finally figured out and fixed the problem.  He wasn't in the office but the secretary was relaying messages back and forth which just made it all more complicated.  But it was messy and time consuming and not helped by Cheweverything Pants who just wanted to get right into the mess and "help".  Did I mention this stuff is STICKY? 
                   So I just get that mess cleaned up and FP finally fed when  I go to do the laundry and realize I am out of laundry detergent.  I make my own which is cheap and easy, but again, time consuming.  Just get THAT taken care of and laundry started when I step on something sharp.  I thought it was a small rock or (ewww) a piece of cat litter. (It's a zoo around here.)  Without even thinking, I tried to brush it off with my other foot.  Only to stab myself in the ankle with the little finishing nail I had actually stepped on.  So, now I have bled all over the kitchen floor.  And Cheweverything Pants is trying to help with THAT mess too.  It's not even noon.

                  Really, I shouldn't whine too much.  We didn't have to shlep to an ER or GI Lab to get the tube replaced.  Nothing was insurmountable, just tedious and time wasting.  But I did waste the most productive time of my day. (I tend to be umm, errr, a tad cranky in the morning so I keep my head down and concentrate on work.  Beats getting arrested for randomly slapping people.) This will probably end up coming out of our sleep later as we adjust our schedules to finish the work we didn't get done this morning.  Sigh, at least it's not hot today.   Then I probably would have simply burst into flames.  And then have to clean up that mess too.  Maybe, somehow I am burning off some karma.  In that case, deal.  Seems fair.  C'mon lottery winnings.