Playing in Pain

We missed church again today.  Not because we overslept.  Nope.  We were up with plenty of time to arrive at the Urgi Center and take our typical seats, waiting in a crowded room.  If I had my copays back each year, I think they would exceed my tax return.  Which is no great shakes anyway, especially with the whole identity theft mess.  But, I digress…

Yesterday was a CYO swim meet.  It started poorly because the bungee on her prescription goggles snapped in my hand.  And they don’t get to warm up before a CYO meet, so there was no way to check and see if the new cord set the goggles right.  So, she want back to her old goggles.  Guaranteed functionality – sacrificing vision.


She swam.  Hard and as fast as she could.  She maintained her time during her first 25 fly in the relay, and took 2nd in the individual fly.  She even swam up – with the 7th and 8th graders for a 50 back, and took 2nd there too.  But it was during the last leg of the 200 free relay – the last lap of her 50 – her father and I looked at each other and knew – the right arm was hurt.


When I met her in the locker room her resolve was strong.  My mission was clearly to help her get out as fast as she could.  But the arm made it tough to change quickly.  We got into the car before it all came out.  She explained how the loss of the prescription goggles altered her judgement and she banged her arm into the diving board rails as she started – out of a lane she has never been in before.

We came home and iced the arm.  We watched as the pain seemed to get worse.  It went from the arm, up into the shoulder and into the neck.  We are so used to there being pain.  This child lives in constant pain.  Some people must think all sorts of things, because something truly always hurts.  But we have learned to put them aside, and, we have to triage.  Last week she walked around for 5 days with a sprained ankle.  Pain is so personal.  Her nerve endings seem so easily excitable.  Any injury seems to trigger an attack of “hyper healing” effort by her body.  Even with 200 mg of MAINTENANCE Celebrex a day, she contends with joint pain and muscle spasms.

But she is an athlete, trapped in a body that is not quite sure how to handle her.  So she presses on, and in between wanting to stick her in a bubble, I am awed by her raw determination.  She wants to RUN, and KICK, and PLAY, and SWIM, and be a KID.

It’s not uncommon for her to spend the day after phys ed. recovering.  Or a day or two after an athletic play date trying to work through the residual pain.  I know that the other kids aren’t fighting their bodies like this, and it breaks my heart.  But she is one determined young lady.

Sometimes the only option..
Sometimes the only option..

So last night we sent a text to our PT.  To know Dr. Jill is to love her, as she is one of a select group of medical professionals who truly works for LOVE of the children she services.  And when you are Meghan you have “PT for LIFE” and she’s been a patient there for about 4 years!  And at 9PM last night we were in her living room – getting informal advice from a very skilled friend.  If you’ve followed our story a while you know Dr. Jill is the impetus behind our Cowden’s diagnosis.  She is the one who said,  “something isn’t right here – too many unconnected pieces.  Take her to genetics.”  And I did.  And the rest is our unfolding story.

Dr. Jill encouraged us to get a muscle relaxant for Meghan at Urgi Care today.

She's an absolute DREAM child - but really God knew what He was doing giving us ONE!
She’s an absolute DREAM child – but really God knew what He was doing giving us ONE!

So we did.  We also got a note because the injury is to her right bicep and shoulder.  Her dominant side.  And there is no practice for her tomorrow.  And no Phys. Ed. on Friday… and then there is the math test this week.  And the gamble as to whether she will be able to write enough, fast enough…  So much to think about.

The muscle relaxant calmed the shooting neck pain for a while, but its on its way back as I type.

We spent some time today talking about our fundraising hopes for Rare Disease Day 2015.  We talked about my promising conversation with the head of the PTEN foundation – formed in December 2013.  We talked about wanting to do something BIG for the PTEN foundation and Global Genes Project.

I sometimes complain about being too busy, but she, like me, needs a positive project – even a simple play date – just something on the horizon to keep her focused.

She managed to type out the homework.  We are getting ready for tomorrow and another crazy week.

We are babysitting my sister-in-law’s 12-year-old rottweiler.  A 3 dog house.  Cause a little more chaos creates more reason to keep on keeping on.

And I marvel that aside from some waning eyesight which I will have to address eventually – my body is stronger, and more able to endure stress than ever before.  And I remember that it’s a good thing I stumbled upon nutritional cleansing when I did.  The closet is full of the smallest clothes I have ever owned, and the ability to endure is not to be taken lightly.

My Favorite!
My Favorite!

So tonight we will get a real sense of how long the muscle relaxant helps.  And tomorrow we will conquer the hurdles of having the dominant shoulder banged up during a school day.

I think I’ll get everything prepared nice and early.  Just in case…

moms - full time

“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.


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.


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.

wizard of oz dorothy and witch

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.

wizard of oz house

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.

wizard of oz all

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….”

wizard of ox witch

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!)

wizard of oz melting

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…