Aunt Em, Arista, Albany, and (Almost) an Ambulance

THAT would be the alliteration to sum up the week that was, Thursday May 5th – Thursday May 12th.

Sometimes I get annoyed at myself that this blog gets neglected.  Then I realize it’s because sometimes I have to LIVE the life, before I can write about it.

It was a rocky month leading into the much anticipated school play.  Her health was questionable.  She spent most of Spring Break recovering from some random illness.  Attendance at swim has been spotty, a true sign she’s not herself, but after attending the Swim Team’s annual banquet the night before, she was ready for “The Wizard of Oz Jr.”

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Meghan with the drama teacher that helped her find a piece of herself.
Meghan knew she liked the stage.  She didn’t know  until she met her drama teacher in 6th Grade, that she also enjoyed acting, and singing.  Her father and I were stunned when we heard her for the first time.  Thank goodness for teachers… she may never have found this outlet.  And it has been such a wonderful thing.  She has met some really great kids, and has had fun along the way.

She was so excited to play Aunt Em in this year’s play, and even more excited because “Dorothy” was being played by a trusted ally, a rare commodity on Meghan’s life.  It made the role easier to get into, and to play with her whole self.

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Meghan and her friend “Dorothy”

Four shows in two days tired them out, but the standing ovation to almost a packed house at the Intermediate School Friday night showed all their efforts to be worth it.

Meg slept almost all day Saturday. This is how it works.  We play trade.  For those of you familiar with the “Spoon Theory,”  (http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)  we often borrow off the weekend “Spoons.”  We don’t get out much, but it keeps things working.  She woke some time around 2:30 PM Saturday when I roused her.

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Sunday was Mother’s Day.  We visited some special mothers, caught up on some homework, and finished a project.  Monday was school as usual, followed by her second year induction into the National Honor Society, (Arista) followed by preparing for Tuesday’s trip to Albany.

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Mother’s Day 2016

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Arista 2016
Some time over the spring break I was contacted by the office of Senator Andrew Lanza.  Apparently, every year, every Senator gets to select a “Woman of Distinction” to be honored at a special ceremony in the Capitol in Albany.  We were amazed, and humbled that he had chosen Meghan.  The youngest to ever receive the honor, he was attracted to her spunk, her determination, and her “can do” attitude.  He liked that she didn’t wait to grow up to start doing something.  He liked that she was 12 and making a difference now.

So on Tuesday morning, Felix, and Meghan and I set out on the 2.5 hour journey to Albany.  The trip was smooth, until we got a tiny bit lost in Albany, but we were easily saved and set right by the Senator’s staff.  Nancy had us in the right direction in no time.

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Every “Woman” had a bio on the wall. We also got a beautiful book with all the bios inside!
We got to the Senator’s Office and enjoyed a wonderful lunch.  We got to sit on the Senate floor, and watch some of the Senate in session.  We walked around the building, and enjoyed the afternoon.

The ceremony began at 5:30 and probably my only regret was that I couldn’t record every moment to replay in my brain forever.  It was one of our proudest hours as parents.

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https://www.nysenate.gov/initiatives/women-distinction

(If you click the blue link above, Meghan is on Page 44.)


The reception that followed allowed for some conversation with Senator Lanza.  An incredibly intelligent, down-to-earth, “regular,” guy kept Meghan chatting for well over an hour.  We took pictures, laughed, and she even secured an internship for the summer after her freshman year in High School.

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Meghan and Senator Andrew Lanza
The drive home got us in the door around 11.  We were asleep by 12 and ready for school and work the next morning.  Tired, but determined, she even made swim practice.

Thursday I dropped her at school regular time.

By 8:20 my phone was ringing with the school nurse’s number.  She was not well, and they were frightened.  They wanted to call an ambulance.  Knowing where that would lead I begged her to wait.  I went into automatic, and with an incredibly understanding group of colleagues and administrators, I was at her school in under 10 minutes.

When I arrived the color had begun to return to her face.  She was weak, but able to focus on me.  I told them I could take care of it, and I signed her out while they wheeled her to my car.  Once in the house I waited a good 3 hours.  No sign of a problem.

Rice noodles and flat ginger ale did her in inside of 20 minutes.  I can honestly say in her 12 years I’ve never ever seen her that sick.  She was in so much pain, periods of time were missing from her memory.  I was terrified.  But, foolishly or not, I held out.  She was hydrated.  I wasn’t taking her to the hospital here.  Not again.  And I knew we were meeting a new GI in the city Friday.  If she could just hold on…

And she did.  Because for almost 24 hours I just didn’t feed her.  She slept most of it anyway.  But, I’ve decided hydration wins, and food can wait.  It worked.  By Friday night she was almost back to herself.

Yesterday she swam in a CYO meet.

My head spins.  And the tales I tell here are simply HER end of the week.  Add in the routine, and the mundane, and…  it’s been a long week.

I have work to do.  Lots of it.  It’s in a big pile right here next to me.  There were plenty of things that “should” have been done that weren’t.  And you know what?  We’re OK.  The house is in one piece.  The Board of Health isn’t coming to inspect my extra dog hairs on the floor.  The laundry isn’t folded.  But it will get done.

Tonight I put me first for an hour, and putting me first is getting the week out of my system right here.  Just me, my thoughts, and a glass of wine.

Cowden’s Syndrome – you’ve got some good fight in you, but we are stronger.  We will take you every time.

We are #BEATINGCOWDENS!

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“I’ll get you my pretty…”

It is late, but I need to decompress.  my apologies to those of you I meant to reach out to personally.

Really – the last few days again have been a whirlwind.

The Wizard of Oz seems the appropriate metaphor – so bear with me.

Some time last week Meghan began complaining of shoulder pain.  Left shoulder – mildly irritated.  So, we gave some tylenol and kept on moving.  But come Sunday afternoon it seemed to take a marked turn for the worse.  And that is where the story began.

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She was struggling to move it at all, and the pain face was coming.  You know – the face that tries to be brave but is so strained it just ends up looking exhausted?  That one.

We got her to bed Sunday night but started to wonder if she would make school the next day.  We waited until she was sound asleep and began poking at the shoulder.  Sounds mean I know, but we figured if we got a pain reaction out of a dead sleep…  and we did.

So I began to Email her awesome PT who did her best to help guide me and keep me calm.  She also got me a 1:15 appointment for Monday.

I emailed my boss that I would be out and I let her sleep in Monday.  Then she woke up.  I guess that’s where it started to get trickier.

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Well, maybe not quite that tricky yet – but close.  The pain was intense.  We decided to try the Urgi Care to see if she needed an Xray.  We waited and were seen by a perplexed doctor who decided against the Xray and suggested we see the pediatrician.  Great plan.  He was on my list but I was hoping to get a jump start since his hours didn’t start till 2.

In the mean time, we went to see the PT.  Have I mentioned Jill and Lauren at Leaps and Bounds PT are the absolute BEST?  We saw Lauren who calmly assessed Meghan through careful range of motion activities.  It was clear she was in great pain.  Lauren told me she was worried about the muscles – clearly strained, and the potential that there might be a slight injury to the rotator cuff.

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At this point I swear  I heard the sound of Cowden’s Syndrome, like the Wicked Witch, cackling in the background, “I’ll get you my pretty…!”

My heart sank.  The shoveling hadn’t helped I am sure.  But the swimming.  That had to be the real culprit.  I felt like I had been punched in the stomach, or perhaps that someone had dropped a house on me.

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It had taken years to find a sport that she enjoyed.  One that she was ENCOURAGED to do.  The pride and excitement on her face – amazing.  And now the threat that maybe it caused this injury.  My thoughts flooded with wonderings about the future.

At 2:30 we headed to the pediatrician.  He evaluated her but wanted an orthopedist.  We tried three.  None took my insurance.  Finally they found one local that takes my insurance who would see her Weds. (tomorrow) at 4:40 – but don’t worry because they are triple booked and we should plan on waiting 3 hours.

Um… no.

So as I stood at the window of the pediatrician’s office I asked him to order the MRI that seemed inevitable.  He reluctantly did.  Then I asked him what to do for her for pain.  He called us back in and looked at her again.

He said what I already knew.  He said, ” No one around here has a clue about Cowden’s Syndrome, and they don’t want to touch her.”  Take her off Staten Island.  Go up to Memorial Sloan Kettering where they first diagnosed her AVM.  Go to the ER up there.  We have no way of knowing if the knot behind her shoulder is a muscle or a soft tissue tumor.  (Thank you Cowden’s)

“I’ll get you my pretty…”  There goes the cackle again.  And a firm reminder to Cowden’s that it WILL not get us

This was at about 5.  So, we had a quick bite to eat and headed up to 68th and York.  They were perplexed by our arrival, but they handled it fine.  They got an Xray, and made Meghan comfortable with heat packs and pain medicine.  The Xray wasn’t read because there was no radiologist on,  so we were discharged hours later with the pain pills, and orders to see an orthopedist – the one who diagnosed the AVM, and to call our endocrinologist for the Xray results in the AM since he is the one we see at Sloan.

At this point Felix had joined us and we were all a bit punchy.  Meghan was stiff and in pain.  I was over thinking and exhausted… together we made quite a sight.

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We arrived home after 11 and I headed  down the street to the 24 hour pharmacy for her pain medicine.  Except – they didn’t have it.  And they offered me no suggestion as to where to get it.  So, at 11:20 – armed with my smart phone, and facebook, I relied on the guidance of a few night owls to get me to a pharmacy.  Medicine retrieved, heating blanket purchased, and Twix consumed – I headed home some time close to 1AM.

Felix was staying home Tuesday.  It was Parent Teacher Conferences for me.  So my head touched down on the pillow some time around 1:20 AM.

Too tired to even think, I could still hear the cackling of the witch – reminding me so much of Cowden’s Syndrome… threatening… “I’ll get you….”

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I headed out to work by 7:30.

I called for the Xray results and got a reprimand by our doctor at Sloan that was appropriate for a child. He was annoyed that I had even brought her to the ER last night.  I told THAT doctor to take it up with my pediatrician.  I really despise arrogance.

In contact with Felix and Meghan we got an appointment for the orthopedist, on the 21st of MARCH!

Since that wasn’t going to work a long term plan, a call to the rheumatologist led to an appointment at 2:30 PM today.

Basically she feels the lump is a muscle and not a tumor…. (So take that bucket of ice water witch!)

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She gave Meghan an order to rest for a week.  Better than a season!  She also gave a script for PT and a muscle relaxant for a week.  We will reevaluate then…

In the mean time, she is asleep.  Resting with a heating pad.  School tomorrow will be tough, but she will make it.

I got through hours of conferences and stayed alert and awake!

I will find the number and call the coach about swimming.

We will not give up.  But apparently she needs PT AND swimming, not PT OR swimming.  We have time.  Not  a worry.  We will fit that right in.

You know what, it has been a wild two days.  But it could have been a whole lot worse.

Everything with Cowden’s seems to have a sense of urgency.  There is always the “what if…”  Her joints are hypermobile because of the Cowden’s.  She injures easily.  But all that means is we have to teach her to get in control of her body.  So the PT is a have to.  That’s ok.  Could be worse.   Least we love our PTs.

AND… it will be PT AND Swimming.  My girl loves to swim.  And she’s not half bad.

A few readjustments.  A few more bumps in the road.  A few more skipped meals, and some more gray hair.  But it will be OK again.

Cowden’s Syndrome gives us obstacles.  We work around them, through them – whatever is appropriate.  As long as we don’t stop.

And well – if anyone says we can’t… we just melt them.  It’s much quieter now.

Hopefully tomorrow runs smoothly.

But for tonight…

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