Friday, February 5, 2016

Things to do in February while it does not snow

                 Soooo, it's February again.  I love this time of year.  It's wee little month usually packed with holidays and superbowls and three day weekends and my birthday (hint, hint, HINT, Goo) and best of all, snow.   Although this winter seems to be defective.  Honestly, has there been a recall yet or do I have to just demand my time and energy back on my own?  Anywhooooo.
                 But since it is indeed February, snow or no snow, I thought I would post some quick Valentine's Day gifts/birthday gifts/ look at me, I'm almost thirteen and have been spotted holding hands with a boy maybe I should get him something gifts. (That's right, Feisty Pants, I have eyes in the back of my head and a better spy network than MI6.)  And, to state the obvious again, dads out there, doing crafts with your kids to make gifts makes you look good TWICE. You're welcome.
                So to get you going for the holiday, here are three quick, charming crafts.  Just make sure to clean the kitchen when you're done. (HINT HINT HINT GOO)

Rose petal sugar-
                 you will need rose petals, sugar, a vanilla bean, and a mason jar (or, alternatively, heart shaped candy molds)
                 Rinse the rose petals very well and pat dry. Place vanilla bean in jar, layer petals and sugar.  Cover and allow to sit for about a week.  You can add a pretty ribbon and give as is or remove sugar and use candy molds to form hearts.  Rose sugar is great for teas or making a scrub or dusting candies and pastries.

Love you to pieces decoration-
               you will need popsicle sticks, string or pipe cleaner, puzzle pieces(we all have a puzzle with missing pieces), paint, marker
                Simply form a base of popsicle/craft sticks (like a miniature raft or table top) and glue together. When dry paint a solid color (anything but red.) Draw an out line of a heart and glue the puzzle pieces in the heart (you are NOT aiming for perfection here, but to be cute and charming) Paint the heart (and pieces) red.  Write "LOVE YOU TO PIECES!!" with marker. Add the string or pipe cleaner for a hanger.

Valentine's snow globe- (I gotta get some snow somehow...)
                   Jar with a lid, small love themed decoration (heart,figurine, whatevs -just has to fit in the jar) glitter, glue

                   Simply glue the bottom of the figurine to the inside of the lid.  Place a handful of glitter (or two) into the jar.  Screw the lid on and flip. Voila, charming and easy. You can add a ribbon to the lid if like but that's up to you.

Monday, January 25, 2016

For Rhonda, wherever we may find you

               So, we have had a kind of sad day today.  Feisty Pants has lost one of her therapists today. Well, not lost, lost.  The woman has not died, for goodness sakes. Although, it kinda feels that way. The therapist is moving onto other things and other clients farther away from here. Sigh.  Change is hard.  Seeing something wonderful end is really hard.  Seeing something wonderful for your disabled child end is really, really frigging hard.  But in the spirit of "don't cry because its over, smile because it happened", I thought I would send this shout out of gratitude for all the therapists and health care providers who have made such an impact on Feisty Pants' life.   (And a special thanks for Simon and Garfunkel for giving me a great title to paraphrase.)
               So, dear Rhonda (and all the other therapists and teachers and nurses and doctors we have lost along the way)  I want to thank you.  For a lot of things. For taking good care of my kid.  For caring about her as more than just a patient. For seeing the child within- and for seeing her as intelligent and caring and full of things to offer the world.   For offering me hope when, even if I never said it, it was sometimes scarce along this journey. For making her feel as if you were truly and wholly on her side.  For occasionally kicking her butt into gear when she was acting like a stubborn kid.  (What?!?!? Feisty pants stubborn?!?!  Who would've thunk  it?)  And, thank you, especially Rhonda for being an amazing calming presence in her life when she sorely needed it.  You were the first person outside the family that she ever said "I love you" to - and that instantly made you feel like family forever.
              Feisty Pants, like any kid, is a lot of work.  But Feisty Pants, unlike many kids, is a heck of a lot of hard physical labor. Every single day she has made it through, someone helped along the way.  Every single night that she drifts peacefully (or not so peacefully) off to sleep, someone worked to help make possible. Any damn thing she does for herself, someone worked hard to help her discover how.
              So, dear Rhonda, and all the therapists and nurses and doctors and teachers we have parted ways with along the way, we wish you well. We wish you peace and productivity and great pay and benefits and love and happiness and all that good stuff.  And if life ever brings back our way, we will welcome you with open arms and hearts greedy for therapy.  You will know where we are, just listen for Feisty Pants' laughter and look for the light in her eyes.  The light that is there because of you.     

Friday, January 22, 2016

REALLY?!? - an open letter to New York State

               So, today I got a phone call from Feisty Pants' pediatrician's office.  It seems they cannot get her insurance (which is NYSMA) to pay for her formula.  I fully admit, it is an expensive formula, but pb & j sandwiches do not fit into a 14 French gastrostomy tube. Feisty Pants has been tube fed her entire life.  First by an NG tube (that's the one that goes down your nose) then by a peg tube (the kind that goes directly into your stomach via an incision in your abdomen- like a second belly button).  She cannot swallow properly due to her CP.  The insurance has paid for her formula up to now. But now suddenly, New York does not see fit to  -and I am quoting here- "pay for more than 570 calories of formula a day".  Feisty Pants is twelve years old.  Her doctor wants her to have and she definitely needs 1950 calories per day.   WHAT YOU ARE PROPOSING NEW YORK IS A DEATH SENTENCE VIA STARVATION FOR MY TWELVE YEAR OLD LITTLE GIRL.  
               I certainly hope this a mistake on your part. I certainly hope that you simply have confused formula for enteral nutrition with BABY formula.  That you merely have not instructed your computer system to recognize the difference, and that come next week, a human being with sentience and discernment will be able to manually override the system and smooth this all out.   Otherwise, very soon I will have to make some hard choices.  Like, admit my daughter to a hospital where instead of  her insurance having to pay for an admittedly expensive formula, you will have to pay for a MUCH  MORE EXPENSIVE hospital stay AND the aforementioned expensive formula.  Or drag my oh so adorable, beautiful, vulnerable looking child in her wheelchair onto the local news where no matter how cute you think you are, you will only come across as the Scrooge who wants kill a disabled child through starvation. (And by the way, isn't that murder in the second degree in our fine state? I believe the wording is "depraved indifference to human life".) Never doubt that I can and will use her cuteness as a weapon, especially in such a worthy cause.

             Make no mistake, I am not being overly dramatic.  This is her basic nutrition. It is literally life or death here.  And you are doing this to everyone I know right now. You are being penny wise and pound foolish by trying to micromanage expenses that will end up costing you more in the long run.  A healthy disabled child is MUCH less expensive than a sick disabled child. I know you think you are being fiscally responsible with this sudden micromanaging over every expense spent on the disabled in New York State.  But you are not.   You affecting  the very lives of the most vulnerable members of your state. They are not getting the services we all pay for. And then that will assuredly cost all of us more in added hospital stays and added prescriptions and added therapies needed to repair the damage you are causing by your actions. Actions to the very people you are supposed to be serving.  For that's what government is- it is the management of services for all of us.  Otherwise- what purpose is your very existence serving at all?

Sunday, January 17, 2016

ABLE Accounts

                One of things that bugs the living hell outta me is the usually unrecognized fact that many disabled are oftentimes simply expected into poverty. Our schools do not usually properly educate the disabled.  Colleges rarely recruit them. Insurance companies damn well allow them to be forced into poverty to further their own profits.  Same with many sheltered workshops. Nursing Homes and group homes are often the only available housing for people who need long term care. It's an infuriating passive bigotry.  The idea is that somehow the disabled are just "poor dears" who would never be able to function in the world independently so why should we all have to deal with them, or acknowledge them, or, shudders, worst of all, pay them a living wage or even be educated in the first place. It makes me grow fangs and start howling at the moon.
                 Thankfully, that is slowly changing.  (way too slowly for my druthers...)   The Affordable Care Act for all its faults, got rid of pre-existing conditions, which is a godsend for feisty ones like my kid.  (Seriously, she would have simply been doomed to poverty or winning the lottery- nothing in between- without that because she was automatically ineligible for most health insurance.)  In home care is becoming more doable as people demand it more.  Sheltered workshops cannot automatically pay slave level wages.  And now we have ABLE accounts. 

                 Able Accounts are saving accounts set up to help people with disabilities save for essential expenses.  That means things such housing, in home care, medical and dental care, community supports, medical equipment, housing modifications, transportation and the like.  This is a big deal because until now people who were on SSI or SSD or had certain public health coverage such as medicaid or medicare had a very small limit ($2000) that could saved in any type of bank account.  Which meant they could not save for things like a stair glide (way more than $2000) or a modified van (also way more than $2000 ) or tuition (don't make me laugh).   Things that would allow them to stay at home, get to work, or get an education and a good job. You know, be a normal grown up and pay taxes and the like.   Able accounts are specially held for these type of expenses (no hookers and blow allowed, thank you) and anyone can add to it (mom, dad, great uncle moneybags, whoever) . They are not considered a resource for government programs (meaning they cannot be counted against the person who has one) and are tax deferred.  The exact rules and dates of when they can be started vary from state to state. (In New York, it was signed into law by Governor Cuomo on 12/22/15 and takes effect 180 days from that date). If you are interested, simply google  "ABLE account + your state" for all the pertinent information.

Wednesday, January 6, 2016

Can I exhale yet? Just asking...

          Well now, it has been about a century since I was able to post last. Ok. Maybe not exactly a century but I can say it was last year. (See what I did there? Snort.) It's just that every time I have tried to write a post in the last three weeks, some weird and/or messy time eating catastrophe has happened. EVERY. SINGLE. TIME.
          First, there was crazy 6 am Emergency Room visit. The Friday before Christmas, at 6 am, Goo yelled up that her sat rates were fluctuating wildly. ( 84% one mintue, 94% the next - for the uninitiated, that's a really big deal) So we schlepped off to the hospital.  To find out that Feisty Pants had a bad cold. Don't get me wrong, I would rather deal with a million colds than one pneumonia, but it took all day.  On the day I needed to grocery shop, finish presents, post, and pack to leave for my folks.  Which meant that we had to do all that on the next day, which meant THAT day's work got pushed back etc etc etc...
            Then there was day of botox shots, or as FP puts it, the day of torturing her for no damn good reason.  Forget that she only got about 10 needle sticks to her face as opposed to thirty or so to her entire body she used to get.  We are still frigging evil and ruined Christmas and her birthday and the rest of her life and she made sure we knew it by yelling for alllllllll day. We are just lying about it being for her own good.  That's what all evil tyrants say.
           Then we went to my folks for the holiday and, since they live in Brigadoon, the interwebs is spotty through that time barrier so no posting there.  I thought I could fit a post in the day we got back, but unpacking took longer than I thought and in the midst of it a starving little kitten LITERALLY wandered in our back door loudly demanding love, food, and squeees and sending the rug rats into a commotion and what can you do but name the damn thing Mistletoe and make more room at the inn?
      The entire week after Christmas was out because Hippie Pants, who really needs cable tv, decided that just might be good week to have her second kid. (The week before was already taken due to Christmas and a relative having surgery to have an eye removed.) So we were a wee bit busy there.
       So, finally, on this last Sunday. When everybody was home, the bags were finally unpacked, the house was finally clean(ish), I thought I could sit down and write a post.  Only, at that very moment, to have a frigging SUV almost wreck into my house. Seriously.  It hit ice, slid into a tree right smack in front of my house and ended up with its smashed up nose on the ramp to our front porch. 
     So, it is safe now?  Can I come out from under the bed? If I manage to break the spell and get this posted. I want chocolates thrown at me and a parade.  And how were your holidays?

Tuesday, December 15, 2015

The Last Minute Frenzies

         Today another Mom of a feisty one asked her facebook friends how they were today.  How we really were as opposed to just a "how you doing?" greeting like we Americans do. My answer took a minute.  It was, by the way, crazed, smelling of lavender oil and with glitter modge podge in my hair. I cannot complain too much. This is the best I have smelled all year. But the question did make me stop and try to catch my breath and take a look around.   It is absolutely nuts here right now. We have made about 2 dozen gifts in two days and have about a dozen more to go. As I type this we are waiting for the chocolate on our truffles to harden before we package them.  And there is now chocolate in my hair to go with the modge podge.  All over Feisty Pants' face, too, (She didn't want us to wash it off and "waste it")
            We have about ten days before Christmas but only about five to finish all our preparations before leaving for an out of town doctor's appointment and then my folks' place.   And then make it back in time for Hippie Pants and New Years and about a million more appointments.  Every time I turn around there's a gazillion more emails.  And something I have forgotten. And one more person I have forgotten to add to my gift or card list. And cards I have to mail out.  And a package or two to pop in the mail. And a few doctors I have to call and schedule or reschedule or remind they are supposed to be calling me over something or other.  And there has been some drama at school (not really involving us directly, but I HATE when adults act like children and children end up getting the short end of the stick. sigh...)

            So, you will have to forgive me if we are not as cheerful as we should be.  You'll have to be patient if we are cranky and out of sorts and totally unprepared this year.  Christmas will arrive. And we will muddle through. And probably actually have a great time.  And Feisty Pants is not sick. And we smell much better than we usually do.  And glitter and chocolate aren't even the worst things I have had in my hair THIS week. The frenzy will pass.  We will catch our breath.  If the worst thing I have to bitch about is a busy Christmas then I am blessed, indeed.  So if I don't get another post written beforehand, I hope you all also having a blessed and healthy Christmas.  I wish you peace.  Also I wish you plenty of chocolate truffles.  Here's the recipe, messy but easy peasy.  Enjoy!

Cookie Truffles- (we usually triple or quadruple but we have a Goo in our house)
1 package your favorite cookies (we use oreos but any will do)
1 8oz package cream cheese (softened)
1 bag chocolate chips
cinnamon, chili powder and/or sea salt to taste

Crush/chop/crumble cookies into mixing bowl.
Blend in Softened cream chese. Mix well .  
Roll into small balls place on cookie sheet (greased or lined w waxed paper or parchment)
Place in fridge/freezer to harden.
Melt chocolate chips in double boiler.  Roll cookie balls in chocolate to cover. Place back on lined cookie sheet.  Sprinkle with cinnamon or sea salt or chili powder (for the adventurous.) 
Eat with abandon.

Sunday, December 6, 2015

On the Merry Go Round

              So, we are almost into the second week of December and Feisty Pants isn't sick.  Except maybe she is.  But she probably isn't. AHHHHH.  Let me explain. The weather has gotten warm again here in the Southern Tier of New York. (WTF UNIVERSE!?!? It's frigging DECEMBER.  How many snow dances do I have to do in the backyard?)  So it is now in the high 40's during the day. Warm enough to destroy my mood and create a ton of mildew.   So Feisty Pants is a tad on the goopy side. (Read that as snotty and sniffly)  BUT her sat rates are fantastic and she has no fever. But Feisty Pants seems slightly off somehow. But she is mostly fine.  BUT Goo and Hippie Pants have spent the weekend complaining they don't feel good.  Not really "sick"  sick, mind you.  Just cranky and achy and sniffly. And they have the chills and are both complaining of fatigue.   But no coughs or fever or nausea.  But Feisty Pants went to sleep yesterday at 6pm and slept all night until this morning at 7 am.  And is slightly cranky.  But she has no fever and her sat rates (a measure of oxygen in the blood) are fantastic.  But we are gonna sit around and stare at her and worry.  Which is just annoying her and making her cranky. (Are you sensing a theme here?)
                And this is my dilemma.  I have gotten pretty good at handling crises.  (Just plow through it, suck down coffee, fall apart later when you have the luxury of time)   I am good rolling with the ups and downs. (I am TOO.  I don't care what Goo tells you.)  I just am unsure on how to handle the little things.  It's probably nothing.  Either their allergies are just simply stressing out their bodies and making the three of them  a misery, ummm er, I mean miserable or it's a minor virus. (unless it is a curse but we haven't pissed off any wandering gypsy witches lately that I know of...)   So I guess we are just riding this out.  But after having lived through a lot of storms, I now jump at the sound of thunder as it were.

                 Feisty Pants is, at this very moment, bitching up a storm.  Everything is annoying her and her hair hurts.  And her toenails.  And her eyebrows.   But she has a severe scoliosis that causes her pain. And the cp causes fluctuating muscle tone which sometimes causes muscle cramps.  And EVERYONE in this house currently has a sinus headache. (We have given her tylenol, but it has not kicked in yet.) And she is twelve, so let's throw puberty and hormones into the grumpy mix because Goo and I need one more thing to try figure out.  But it's December and it's effing forty degrees out so she could very easily be brewing an infection right about now.   But her sat rates are good and she has no fever.  AHHHHH