Monday, November 13, 2017

Ahhhh November

                  So, it's been a few weeks or so since I posted.  We've had five doctors' appointments, 15 hours of driving back and forth to said doctors' appointments, two more tests scheduled (including our FIFTH sleep study in the past year), three more medications (now up to fourteen)  and we put our Christmas tree up.  (You're welcome neighbors!) Goo has been blasting carols since 12:01 November 1st.   Also, just for sh*ts and giggles, I think Feisty Pants is a touch high.  The neurologist says she is NOT high.  It's just that "grogginess" and "staring into space" can be "passing side effects of starting a new seizure medication."  (The same can said for being high, but what do I know?)
                But anywho, it is, thankfully, November. The fun frenzy of Halloween is over.  The Christmas rush is not on yet. It's not officially the holidays because no one has thrown up yet. It has gotten chilly. (YEAH!)   The clocks have been turned back. (Double YEAH!)  We only have one more out of town doctor's appointment this month (crosses fingers and toes).   The long term prophylactic antibiotic seems to be doing it's job. I do have an official crap ton of insurance paperwork to do soon but that should open up avenues for Feisty Pants to get some more therapies. And no one seems to have voted for the apocalypse this time around.

                 I am hoping this sensible streak will continue. I am in love with November. It's chilly.  There are no pressing holidays other than Stuff Yourself like a Turkey Day.  Twilight comes earlier and lasts longer. There's football and pumpkins and last minute yard work. But nothing pressing or evil or overly hectic.  As long as November stays kind and does not become a fickle bitch, we can all just enjoy this grand in-between time.  So let's all throw on our comfiest, ugliest pj pants and grab a cup of cocoa.  We can all just cuddle on the couch, argue over whose team sucks the most, and long for the glory of snow. 

Monday, October 30, 2017

It's the Great Pumpkin, Feisty Pants!

                       Happy happy Nerdoween!   The weather has finally turned chilly.  My roof is finally done. (I am literally and metaphorically grateful for the roof over my head.)  The Feistymobile seems to be chugging along nicely.  Best of all, next Sunday we turn the clocks back to where they belong (HOLLA-LUJAH!) and I may just get an extra hour of sleep.  
                        Now all we gotta do is get those pumpkins carved and finish everybody's costumes in time for tomorrow. Fiesty Pants is simple.  She is all done thanks to the generosity of Auntie Awesome Pants (thank you!!!)  who sent her a unicorn kigarumi over the summer. I expect it will become Feisty Pant's pjs, costume, formalwear, and uniform for all occasions this winter. (It's warm, it's soft, it's a pretty blue, and it has a built in horn.)  As for everyone else, well now's the time for the last minute nerdoween frenzies. (Cue screams and maniacal laughter and rolls of thunder.)
                        So if you're also always a day late and a dollar short like us, here are some last minute links to help you escape the twin beasts of procrastination and disorganization.  Good luck and Godspeed.
                       
Pumpkin Stencils:
  PumpkinPile 2017  Hundreds of stencils here
  Society 19 Adorable Pumpkin Carvings  Cute and unusual
  Make Use Of- creative pumpkin stencils  Some more intricate ones here

  
Last minute Costumes:   
   Think inside the Box-  Eight cardboard box costumes
   HGTV Easy White T-shirt Costumes We all can scrounge up a white t-shirt         

                         

Tuesday, October 24, 2017

If it's Tuesday, this must be Belgium

            So, here it is Tuesday again.  Must be Belgium, or in our case Syracuse.  Seriously, we seem to be running to Syracuse (or, occasionally, Philadelphia) every Tuesday. Orthopedic surgeons (we see two currently), infectious disease doctors (that one is a whole team), pediatric neurologist, ENT (for Botox), physiatrist (more Botox), low vision specialty ophthalmologist, gi doc (g-tube), and today’s flavor, pulmonologist.   I swear we spend more time in cars than an Uber driver or James Corden.  
            And those are just specialists we see regularly. That doesn’t include her regular pediatrician. Or therapy (physical, occupational, speech, and visual). Or appointments with equipment vendors, or social workers, or state health department workers, or the pharmacy.  Or all the paperwork from all of the above.  Think of the paperwork you fill out for your doctor.  Add a dozen more medications, forty plus hospital stays, a gazillion surgeries and illnesses.  Times all of that by all the people I just mentioned.  Finally, add six more pages just because. And whatever you do, don't forget to sign extra paperwork so all these docs can talk to each other, the therapists, the school, and her nurse.  And have copies of EVERYTHING to give the nurse and school.
             Plus Feisty Pants is on a dozen or so meds that we have to administer over the course of a day.  Plus FP has to be hooked to a food pump six times a day.  Plus she has to be suctioned at truly random intervals.  Goo and I sleep in shifts to accomplish all this.  Now add all those other creatures you love, family, friends, pets to take care of. A house to run. (Feisty Pants alone generates a load of laundry per day)
              Plus all these out of town runs take two people, so Goo has to give up sleep which just makes him a joy to be around.  And we have been sitting here in a crowded, overheated, little room for an hour now waiting. ( I just dare any doctor's office to threaten to not see her if we are ever late. I will turn into an utter banshee over that little bit of arrogance.) Something is going on in one of the other patient rooms.  Doctors keep gowning up and masking and running in and out looking concerned. I cannot even complain.  We have been that room often enough. In a few minutes, the doctor and nurse will walk in and over the course of the hour (yes, HOUR) one of them will casually say, “Oh, you don’t work?” to me.  I will simply explain the Feisty Pants is my job.  I won’t hit them or yell or anything.   

               This frigging day better end in dark chocolate though or all bets are off for tomorrow.
           

Monday, October 9, 2017

Are you sitting down for this one?

                   I was unsure whether to write this post about our long, infuriating slog to try to get a new wheelchair for Feisty Pants or to complain about whoever forgot to turn off Summer's oven.   But frankly, even though this wet, sticky, humid curse of a summer will never end, even I am tired of hearing myself complain about it.  (Honestly, it's like living in the Devil's armpit.)   Surely it will either end soon or kill me through sleep deprivation so won't be much longer either way.  So since I am a little tired and crabby  (What?  I said little and I meant it, I just smell like brimstone right now is all.) I am going to write about trying to get FP her new wheels.
                 Since Robokid had her spine totally rebuilt this summer, part of which included anchoring her rods into her pelvis, she needs a completely new chair.  Her old chair was rebuilt, but still does not meet her physical needs.  It has been three years since her last completely new chair (as opposed to rebuilding the seat only).  Shriner's did a complete wheelchair evaluation and wrote the doctor's order and letter of medical necessity. These were then sent to the vendor.  Who did nothing. For 14 weeks. And didn't tell that he wasn't going to submit it. I had to hunt effing jerk down myself and ask what was taking so long.  He claimed he had tried to get a hold of the PT from Shriner's but she did not get back to him.  When I talked to the PT, she informed me that she had indeed talked to him AND told him if FP's insurance refused to pay, Shriner's would.   And yet this vendor STILL refused to submit. He finally tried to set up an appointment with us so "he could explain and repair her current chair."  That we had already had rebuilt.  I told him I was not interested.  Either submit like we had asked or give me the paperwork. (Those orders and the letter of justification.)  Which he then sent to Shriner's (not me) and told them I had fired him. 
               We have found another vendor. We'll see how this one goes.   But the appalling arrogance astounds me. I have seen equipment vendors refuse to submit orders before, but usually only if they fear they won't get paid. This man was told no problem, he'll get paid. And yet he still wouldn't do it. So tell me. dear readers, why did this jerk do this?   It was not about not getting paid.   Was he offended by me, a mere parent(and a female one at that) daring to challenge his authority?  Was he covering up for something else- did he screw up her billing before and not want her insurance really looking at it?  For the life of me, I cannot figure out why this guy wanted to not only turn down a sale but try to actively sabotage her getting to another vendor.  

               Honestly, if this zombie summer doesn't shamble along soon or we don't finally get out from under all this nonsense, I will be asking you all to get me a hat to pass around for bail money.

Monday, September 25, 2017

Tunnels

          So, it's only been a million years since I posted, or six weeks give or take.   I guess I can stop pouting, um errr, sitting with my feelings for a bit.  (What?!? I was totally not pouting at all, honest.) But it's been a very long summer here in the Tired People's Republic of Feist.  Feisty Pants has now had three spinal surgeries in two states.  (Only one of them not planned!) My roof still has a big old tarp on it. (I'm sure the roofing company  will get to us any day now.) We waited for 14 weeks while some jerkoff, um err, I mean wheelchair vendor, no I really do mean jerkoff,  made my kid wait while he did NOTHING. And the sycophantic prostitutes in DC, um er, I mean our completely trustworthy representatives are trying to take away her health care. Again.  If it wasn't for the new catastrophe of my car dying I'd think I was in a low rent version of Groundhog's Day.  Except it's an endless depressing summer instead of Punxy in winter.
            But enough whining, really I'm almost fed up with myself.  The roof will get done.  (After all, they want my money.) The last surgery (to clean out an infection) was a success. The picc line she had for three weeks is out. If FP is on antibiotics for life (not kidding on that one), it really is a minor price for good health and a straight back. She already takes a ton of meds.  One more really isn't much. Feisty Pants is back to school and flirting with Boyfriend Pants.  I knew a guy who knew a guy (Take a bow, Hot Pants) so the Feistymobile should be up and running in a few days.   Surely this godforsaken heat cannot last much longer.  October has simply got to come and bring with it chilly nights and pumpkins and ghosts and sweaters and a million other things I will especially grateful for after this crazy, sweaty debacle of a season.   Heck, it even looks as if this latest attempt at institutionalizing depraved indifference to human life might fail. (Don't count on it though, keep calling and tweeting and emailing. Make sure they know exactly what it will cost them to harm our most vulnerable loved ones. **cough killtheirdamncareers cough cough**)

              So I think I will take a risk and get off my whiny butt. It's about time things got back to whatever passes for normal around here. We've got Halloween costumes to get (Feisty Pants wants to be a unicorn. She even talked Goo into being Unicorn Poop. FP thinks she's hysterical.)  We have a new wheelchair vendor to harass. (That will be a whole new post.) We got a bunch of appointments coming up. And the holidays are right around the corner. In other words, we do kind of see our version of normal at the end of the tunnel.  (Please don't be a train.)

Tuesday, August 1, 2017

What We Did on our Summer Vacation

                 Well now, it's been long slog through a hot, sticky summer, hasn't it?   Spent a million hours worrying and a million more being grateful. Straightened out a kid. LITERALLY.   Almost lost, but then didn't,  my child's healthcare and future.  (THANK YOU RESISTANCE)  Had it rain inside my house. Almost broke the nurse. (ahhhhhhhhh)  But we have made it through.  Summer's almost over and I'm feeling more grateful and relieved than I thought would be possible. 
                So, thank you to Shriner's Children's Hospital  You really do perform miracles.  Thank you to the surgeons and nurses and therapists and social workers.   You were amazing.  Thank you to Hot Pants, nurse extraordinaire.  Your skill and dedication is amazing.  Thank you friends and family who were patient and understanding when we were sleep deprived and forgetting to call.  Thank you to our house insurance for agreeing that it should not be raining inside and covering it quickly.  Thank you Hippie Pants and company for keeping my house together and the zoo alive whilst we were gone.
                And since you are probably wondering what on earth "literally straightening our kid" means, here ya go:

Before:
First Procedure:



Second Procedure:


After :


It's been long. It's been exhausting.  It's been amazing.  And I am so very grateful.

Sunday, July 23, 2017

There and Back Again

            Well now, it's been a million years since I posted. Or three weeks, whatevs.  We are finally home from the great hospital expedition of 2017.  Robokid is healing up nicely, barring a mild thrush infection from all the antibiotics.  I do wish we were managing her pain better but opioids are out - depresses her breathing, as are nsaids -will affect how her hardware/spine heal and bond together.  We are stuck with tylenol and distraction for the time being.  For the most part it's alright.  Feisty Pants is feisty as hell and tough as nails.  But from around 6pm to 7pm every night, she sobs.   We are not quite sure why.   My guess is pain but it could be pain plus fatigue or even just the emotional effects of having, as the surgeon put it, her entire nervous system tinkered with.   So her father and I, along with her nurse, second guess ourselves, hold her hands, and feel like horrible human beings.   Until about 7pm, when she magically stops and the Universe becomes wonderful (or at least, normal) again.
             Other than that, it's just really weird coming home from a long hospital stay.  Feisty Pants has had so many and they never seem to change.  Your world is turned topsy turvy, often with no notice and breakneck speed.  Then the day to day hospital life becomes it's own weird little routine.  Then you are shoved back home.  It's like coming home from war or waking up from a coma.  (I'm at least half right there.) The world is exactly the same but yet for you and yours, it isn't.  The house looks the same.  The world is the same.  But you somehow are different and yet you need to find a way to fit yourself back into your old life as if putting on a pair of old, comfy shoes.
               In an odd way, it's a little comforting that my house tends to a little chaotic.  I may be bitching and screaming and kicking as I put my house back together, and unpack, and shoo out the various lunatics (two legged and four), and catch up on three weeks worth of laundry. I am definitely bitching as I try desperately to catch up on paperwork and make doctor's appointments and get even more paperwork now made necessary by FP's surgery/hospital stay/shaman treatment/exorcism.  But it all gives me a way to slowly catch up with myself psychologically until I start to see light at the end of the tunnel, and realize we are truly home at last.