Friday, July 29, 2016

Whew...

                   Whewwwww.  What difference a week makes.  The past ten days have been hot and crazy but incredibly productive.  My mother had surgery on her very broken neck and has been transferred to a rehab hospital.  Goo and I took Amara to Shriner's  Childrens Hospital in Philadelphia and they have agreed to do her scoli surgery.  So, since I spent the last post whining and bitching, I guess I ought to make this post about what I am grateful for.  So, in no particular order I am very thankful  for the following.
                    1) I am very grateful that my incredibly stubborn mother gave in and had her surgery.  I do not know what force of nature changed her mind, but may the heavens bless them.  She is doing very well for a spinal injury patient with bones of an ancient hummingbird.  The whole family is breathing a collective sigh of relief right now.
                   2)FP is REALLY happy with school this summer.  Her nurse is, as usual, awesome. We knew she would have a different teacher. So far they have all been great but I worry. (She had progressed/aged out of her last class.) She got a teacher she had before that she adored so the atmosphere for her is relaxed and comforting.  And she is really digging the summer's curriculum.
                   3) The trip to Philly went really well.  We were a little scared because of the traffic.  Coughcough DNfreakinC cough.   But the drive went swimmingly.  In fact, we  were early.  And then they took us in early instead of making us wait. YAYYYY  And then they agreed to do her surgery (sometime after Christmas) double YAYYY.
                  
                 So now, we have a ton of stuff to do to make arrangements.  And it's still  effing hot (are all you winter whiner's happy??) but but but, the major crises and obstacles are done and over with, and turned out remarkably well. I am so very thankful. You will have to excuse if I'm psychologically whistling while I work right now. Thanks for reading.

Monday, July 18, 2016

Monday Monday Monday

               Oh, today been has the Monday-est of Mondays. Sigh... The cat peed on Feisty Pants' bed.  And her crash pad.   For the uninitiated, a crash pad is a large foam filled seat/mattress thingy.  Like a really big bean bag.  In our case, a futon cover filled with blocks of industrial foam. (Disabled kids often have seating and positioning issues and you have to get really creative, or rich.)   Notice I said industrial FOAM, you know like a sponge. Great for soaking up liquids. Took almost half a gallon of white vinegar to clean it. The cover is still in my dryer as I type this.  (Damn dryer is temperamental and old and cranky. I think it's balking at the heat and humidity.)
                Cheweverything Pants has decided we pay too much attention  to the cats and has taken to clawing her ear open randomly.  Just enough to make the house look like an episode of CSI:Veterinarian's Office.  (She has allergies and her ear itches.) We have now taken to buying veterinary superglue.  (Don't bitch at me, we tried EVERYTHING else- bandages, ear wraps, a homemade doggy babushka.  She MacGuyvered her way out of all of it.) 
                 Last week, my elderly mother fell down the stairs and literally broke her neck and is currently balking at the needed surgery.  I don't think she realizes that what she is risking isn't pain or life and limb but her independence that she values so highly.  She may have changed her mind by now.  I don't know.  No one has called me and my dad is certainly with her in the ICU where no cell phones are allowed.  (C'mon Facebook, don't fail me now.  Surely one of my gazillion relatives will post soon.)
                We did a small favor for FP's nurse and she did us a HUMONGOUS solid by giving us a gift card to a restaurant so we would not have to cook in this stifling humidity today.  So I promptly celebrated by dumping guacamole down my bra in public.  Go me.

               So dear reader, I don't mean to bitch or whine at you.   But Feisty Pants is a lot of work and anytime you have a disabled kid, EVERYTHING becomes more time consuming.  I live in awe of how anybody ever deals with more than one feisty kid at a time.  Or becomes a member of the sandwich generation and cares for a feisty one AND an elderly parent at the same time.   Those people deserve chocolate and lottery wins and big ass halos.   But if I am gonna be honest about this journey, I have to portray the good crazy and the bad crazy.  You gotta know some days will be effing MONDAY all effing day.   Don't worry though, it passes, it really does.  Fridays and bedtimes will come back again.  I promise.  I wish you all peace.

Thursday, July 7, 2016

In which Feisty Pants finally does something fun finally

                So I haven't posted in week or two.  Feisty Pants is out on break right now.  Usually that means we have a little more time to get things done, but not this break for some reason.   Which of course just means Feisty Pants is oh so bored to tears with her horrible, no good, old fart family.    I don't she how she manages.  It must be like being a prisoner in the boring wars.  Just ask her.  She will tell you. (Last week, she told her nurse we keep her locked in the basement just to be evil to her.)
                Not that I blame her.  We are just so totally evil.   First we managed to commit germ warfare and give her a mild summer cold last week.   I don't know how- she and her sister were the only ones to have it.  But she is sure it was us.  Just to keep her "tuck at home" (stuck at home) .  Forget that she actually was only mildly ill for a couple of days and still got to go on a train ride to Cooperstown with cute boys.  Or, as Feisty Pants gleefully told her sister, she went on the Hogwarts Express and her sister didn't.  But still didn't count 'cause we are EBIL EBIL EBIL (that's how FP pronounces evil).   
                 And forget the Fourth of July.  We cheaped out by deciding to have a sundae bar with cake and ice cream and then setting off an official crap ton of fireworks.  Why did we not have a full party?  And she has seen real fireworks on tv- these were not it. They didn't go into the air like real ones. Sheesh. And forget that she was giggling and laughing the whole time, Feisty Pants was just being nice.
                Do not even bring up yesterday at all.  We dragged her to Syracuse and got her salivary glands botoxed.  For which we should be raked over hot coals.  If it works and means she does not get pneumonia well fine, but that is not the point.  The point is we are mean and made her go see the local torturer to get her face stuck with the world's biggest needle. The sadist was quick too.  He kept jumping out the way when FP was trying to kick him right in his Ph.D.

                 But, today, oh today, we finally got things right.  We let her out of her tiger cage in the basement.  She went shopping with the nurse and found a new bathing suit.  ("All red, white and cute without peachy."  I think she means red, white and blue- cute without being preachy.) Then the nurse met us at a county park with a BEACH and SWIMMING and best all- CUTE LIFEGUARDS.  Hell, it might have made up all the torture we put her through on a daily basis.   She only had wait thirteen years for it.