Snow Boots

The winter boots are still in the closet.

It’s June 12th.

Actually Meghan’s room has a basket of winter boots that are not only off-season, but are too small for her.

It’s June 12th, and that is definitely a new record for me.

june12

In my old life clothes got changed systematically in April, and early October.  Jackets got washed, shoes got put away.

That was my old life.  I don’t remember it much.

I don’t really have a big closet.  The spring shoes are upstairs in the hallway.  All over the floor.  I’ve been getting one pair at a time as I need them, but if I don’t hurry and make the switch soon winter shoes will take over my bedroom floor.

Thankfully, Mother Nature seems confused about the season.  That is buying me some time.

Mother-Nature

In my old life, nothing was really on the floor – ever.

We went to the doctor today.  Shocking news really, I know.

We went to the doctor today in hopes of replacing the endocrinologist with someone more open-minded, and “outside the box.”

EPIC FAIL.

What we got instead was a closed box, closed-minded,”I won’t take on your kid, so stay where you are” doctor, in a really bad suit.  (And I’m not much about fashion – so you know it was a REALLY bad suit.)

I had lots of time to look at her, and the suit while I used my hand to keep my mouth from spilling out my actual thoughts and embarrassing my daughter.

I brought the 3 page synopsis of tests, hospitalizations, and medications.

I brought the 3 INCH binder full of lab tests and pathology reports.

I brought the CD of the neck sonogram.

She glanced at her most recent blood work.  She told me her TSH was too high.  She told me she needed more Synthroid.  She told me her current team was just fine.  Then she told me twice they were better suited to treat a Cowden’s Syndrome patient than she.  Feel like a leper much?

I asked all sorts of questions.  I asked about T3, and potential problems with synthetic absorption.  I reminded her that in addition to PTEN she has an MTHFR mutation which impacts her ability to process B12.  I asked if there could be anything else she has trouble processing. (Hint Hint… synthetic thyroid hormone?)

“You’re very smart,” she tells me.  “You know a lot,” she says.  Yet, she deflects my questions like a goalie with a hockey puck.

Hockey-Stick-and-Puck-Photographic-Print-C11950881

News flash.  I don’t need stroking – just answers.

But I watch my tongue.  And I watch my tone, because my daughter is watching my every move, my body language, my attitude.  She is using my response to gauge whether she needs to be uptight.

I asked what was the upper limit for synthroid.  I was told there was none.  I was told that the dose would just continue to be increased.  I was told she would likely reach .200 mcg.  I expressed concern.  I was told not to worry.  The body only absorbs a percentage of the synthetics.  Um, that would be the point of my worry.  She doesn’t have a good history of secreting junk.

I got a lesson on the pituitary and the up and down regulation of TSH.  I was told when to dose the medicine.  I reminded her I have been on thyroid replacement for 27 years.

She asked me if she had answered all my questions.  In my old life I might have politely said, “yes.”  But, this is not my old life.  I smiled, shook her hand, and said “No, actually you didn’t, but I don’t think you know the answers.”  Then we left.

In my old life things were neater, and more orderly in every aspect.  Sometimes I miss the order.  But not for long.  There is nothing orderly about this kid, except her behavior (98% of the time,) and I am learning to embrace the chaos.

She woke this morning feeling like real crap.  Exhausted from swim practice (she made it almost through) and fifth grade trip yesterday.  She hurts.  She is mellow.  She has fun with the kids, but she’s not herself.

Maybe it will just take time, but hours and weeks and months of childhood seem to be ticking away.

I pushed her today to start making dates with friends for the summer.  Her friend’s parents must think I am weird.

It’s as important, or MORE important to plan pay time as it is to plan doctor’s appointments – for so many reasons.  And since we have so many appointments, I want to start with the friend time – NOW.

We live in the middle of New York City.  One would think finding pediatric endocrinology in the mood for a challenge would be much simpler than this.  Instead I am left to return to the surgeon on Monday, so he can validate himself by telling me he doesn’t feel anything in her neck.  And then, back to see the resident of her endocrinologist in July.  (The actual doctor takes off February, July and August – so he has yet to see her since the surgery.)

Life is not ours to plan.  But, we have to try to schedule the fun stuff before the days get away.

We RSVP while holding our breath.

There is more “One day at a time…” than I have ever known.

one day at a time

Maybe there will be some time to get those snow boots away.  In the mean time, if you do stop by- don’t judge the hallway.  Or the closet.  Or the dog fur.

I took a walk yesterday, and another one today.  I listened to music.  It’s a slow process, but I am working on my emotional health.

It seems to be the only thing I can control.

I am working on those foundation stones for Meghan’s bridge.

And in the mean time, if you happen to need any snow boots – I can get them for you in a hurry.  I know exactly where they are.

snow boots2

 

 

Swimming Upstream

sardines

The phrase “packed in tighter than sardines” was in my head as Meghan and I tried to navigate the overcrowded local middle school fair tonight.

It was hot.  Hotter than it should be October 9th, but exactly as hot as an overcrowded Public High School cafeteria is on your average fall day.  It was stuffy, humid, and uncomfortable.

As we traveled from table to table, remarking how much easier it would be to see over the never-ending crowds if there were some signs indicating which school was where – we just tried to get a feel for the place, and for each table.

We went interested primarily in two schools, but open to read and learn about more.  One school is small.  It works off a lottery and opens only 150 seats a year.  The other school has over 1100 students.

And as I pondered some pros and cons based on size alone, I was reminded of something a friend from work said a few months back. I may not have her exact words, but it was something to this effect,”The problem with where we live is that something becomes popular, just because a few people go there.  Then it gets more popular, and more people go, but no one ever investigates the quality.   It develops a reputation based on one feature, and people don’t look farther.”

lottery

There I was, one of those people.  I kept saying I wanted my kid in the lottery for the school, “because its small.”  I was not impressed by the people at the table.  I was not impressed by the lack of information about the school.  I was not impressed at all.  I may still go to their open house, but it will be with a very open mind.

Then there was the other school. The one with 1100 kids and the principal himself standing in front of a well constructed information board.  He answered questions, clearly, honestly and patiently.  He spoke with confidence about the school.  He invited parents in during the school day for tours.  He looked every parent in the eye and spoke as if their child was the most important thing on his mind right then.  And, even if he doesn’t remember any of them tomorrow, he proved himself to me.  It’s difficult to fake the sincerity involved with shaking someone’s hand and looking them in the eye.

And we were about an hour in to this ordeal when Meghan’s knees began to give her trouble.  Still pressing on – because that’s what she does – I knew time was of the essence.

I also knew it was time to have the conversation about “barrier free” schools.  See, in the city of New York, most schools have multiple floors.  This is fine for most kids, and for general physical fitness.  But when your 10- year -old has already endured 4 knee surgeries…

There will be discussions about the IEP, about the 1:1 health paraprofessional, about the physical therapy, and about the appropriate placement for Junior High for my girl.  Because wherever she goes, the Cowden’s Syndrome goes too.  So we need to find a place where they are BOTH welcome.

whatplan

Every which way I turned tonight I ran into old friends.  There were some I haven’t seen since preK, and others we connected with at various points along the way.  The kids are older now, almost young adults.  I can still see them running on the lawn after PM session, or on the soccer field.

All of us looking, somewhat stunned, somewhat unsure of what the right place will be for our child.

deer_headlights

As I drove past Lowe’s this weekend I saw a Christmas tree and almost got sick.  “Wishing our lives away,” I thought to myself.  Except tonight several hundred parents and children stood, on October 9, 2013 contemplating placements for September, 2014.

I find this just so ironic, considering mine is clearly not the only life that can’t plan a week in advance.

I put Meghan in a chair to rest her knees while I finished the last of my conversations with two lovely, helpful women.  And as we began the trek back to the car I had a million questions racing through my head.

Question-mark-sign

There is clearly a lot to do, and a lot to think about.

But, that will have to wait.  Tomorrow’s appointment is in Long Island, and even when they try to fast forward my life, it reminds me that we can only travel one day at a time.

 

I WIN!

Yep.  Finally the taste of victory, and I will savor every single drop.  I know all too well these moments don’t come often.

Sandwiched between way too many doctor visits this summer, were a few other pressing problems.

We need a new roof.  Well, that one is cut and dried.  Pension loan.  Money available – job before the winter.

The bay window in the front of the house needs to be replaced.  That one, not as easy.  Lots of paperwork to participate in a class action lawsuit where apparently lots of these windows have leaked.  WAITING, and following up, and WAITING, as the wood shrinks and peels.

And then there was the car.

The car we bought in December after this happened in November.

photo 1

The slightly, (but not too fancy because who was ready for a car payment?) upgraded car, was the same make and the next model up.  It included more space, and XM radio capability, and the ability to have a navigation system in the car if we decided to subscribe.

If you have spent more than 5 minutes with me you know I can barely find my way out of a paper bag.

In the midst of being tired, and sore, and frustrated about the accident, I was THRILLED to have a navigation in the car.

The navigation was also connected to a blue tooth that went right through the car speakers.  My phone synced to the car and I could talk without worry.

I was thrilled – when I wan’t frustrated.  Or lost.  Or left dropping calls, or using my Iphone to take me places.

The car wasn’t working right very early in the game.  We ignored the “glitches” for a few months thinking it would get better.

Then in April it made its first trip in for service- only to be declared healthy.

Until it wasn’t.

Then it went back in.  This time a new radio.

power-of-persistence

Nope – that wasn’t it.

And so on and so on and so on and so on.

I drove more rental cars this summer than I ever want to drive in my life.

During one stretch the car spent 11 days in the service station.  They said they couldn’t fix it.

They called in the field tech (“Magic Wand Guy.”)  He said it was fine.

Nope.  Not fine.  My Iphone is full of voice memos of me trying to get places.  It took us 18 minutes to get started on the trip to the Philadelphia Zoo.

At one point I drove around the neighborhood giving it addresses.  It was 2 for 10.

And the sound on the blue tooth just kept getting worse.

never never give up

I didn’t know much about the Lemon Law, except that it exists.  But hidden inside the glove box of my car was a handy book explaining it.  It also gave me detailed instructions on how to file a claim (free of charge) to be arbitrated by the Better Business Bureau.

I read.

In between trips back and forth to NYC for doctors, I read and I learned, and I first tried a letter to Corporate Office.  The deliver confirmation says it was received July 22.  I wonder when it hit the shredder?

Next, I opened a case with the Better Business Bureau.  They closed it when “Magic Wand Guy” was coming to fix the car.  After he declared it fine, and before I even drove it off the property, I tried the system again.  Still broken.  I reopened the case.

When they ask what we would like to solve the problem my husband said, “Tell them we want a new car.”  I was really hesitant.  He explained his fears that the problem that no one could seem to fix likely lay deep in the central computer.  I trusted him.

Persistence Dog

It took so many hours to prepare the documents.  I wrote a narrative that was over 10 pages.  I faxed.  I Emailed.

All of this in between dragging ourselves back and forth to the dealer in between doctors.

Today it paid off.

I finally got that call from corporate.

They are replacing the car.  No out of pocket cost to us at all.  We went tonight to decide on a color.  The VIN number has been assigned to us.  7-10 days for the paperwork.

win1

Then I drop off the old car and drive away with the new one.

If you asked me in July if I would ever buy another car from these people again, I likely would have said, HELL NO!

However, with so much time spent together I developed a respect for the Service Manager.  And, in the end he was our advocate.

And tonight, while we filled out papers, with no commission to be made, the salesman was kind.  He was friendly and patient.  He was personable and understanding.  He got that WE matter.

We chose black.  Time for a color change.

black sonata

So many things go wrong, so often.  Hanging onto the anger will make you sick.  And, well – we haven’t got time for that.

Sipping my t+Chai I have peace.

www.meghanleigh8903.isagenix.com
http://www.meghanleigh8903.isagenix.com

Talking on the phone to my father before he told me a story.  The day Meghan had her hand surgery, I had to go drop the car for the (millionth) time.  I was stressed about leaving her, and about the whole mess.  He told me tonight she said, “I don’t know why Mommy’s so upset.  She’ll get this taken care of.”

Tonight when I was so happy she said, “I never doubted you.”

Her confidence.  Whatever I did, by whatever grace I have it- I hope to keep it for a long time.  It’s quite the compliment.

I don’t keep a win/loss column.  It would be too distressing.  But tonight – we win.  And for tonight, that’s just plenty.

Make-The-Best-Of-Everything

Life Changed Forever

September 11, 2001 I was teaching second grade for the first time.  The kids were so little.  ( I am sure you remember where you were too.)

The school was so well run, it was hours before I would know exactly what horrors had transpired so close to us.

I work in a school, that is part of a community where parents who are police, and firefighters are the norm.  Not to mention our teachers – married to FDNY and NYPD.

Our community is so close to Manhattan, most of our working parents worked down town, or mid town like my husband.

As I watched the students leave, one by one, I was struck with the reality that this day they lost their innocence.  That no child would ever again grow up as carefree as I once was.

As the names came out, and the stories unfolded we all knew someone – some a lot closer than others.

Funerals unending.

Lives changed forever.  Still changing.

Street signs commemorating victims.  Memorials, tributes.

Cancer. Asthma.  Chronic illness. PTSD.

Everyone remembers, to some extent.  But here, in New York the pain is palpable.

This morning we prayed that those suffering heartache would be able to take solace in the smiles and laughter of the youth surrounding them.  We have not forgotten.

WTC cross

9/11 brings with it the promise of 9/12,

To all those with painful hearts- You are loved and remembered.

Bravery/ Courage

Brave

Bravery – Ready to face and endure pain; showing couragecourage
Courage – strength in the face of pain or grief
It’s not a secret how I feel about my girl.  It’s not a secret at all that I hands down find her to be one of the bravest and most courageous children I have ever known.  She faces adversity better than most adults I know.  She presses onward with determination, not drama.
I don’t mean for a minute that there is never a hiccup on the path.  That would be delusional, and even unfair for a child who has yet to pass her 10th birthday.  But I mean, that despite the pebbles, rocks, and sometimes boulders tossed in her path, she keeps her head up and stays focused on what matters.
Yesterday we has testing at MSKCC in NYC.  We were told to arrive by 8:30 AM for testing at 9.  It was to be a 2 hour pituitary function test, followed by an ultrasound at 12:30.  Then we would be home by about 2.
So we woke at the crack of dawn – a nasty habit this summer – and arrived in our designated spot by 8:20.  As we were meeting the oncology nurse, a truly LOVELY and compassionate woman- a representative from the doctor’s office came bustling in to tell us the medication needed to start her test had not arrived at the hospital, and should be there by about 3.  She then proceeded to tell me maybe I wanted to reschedule.
Let’s say succinctly that the conversation that followed took place out of Meghan’s earshot.  The medication would arrive at 3.  We would have our ultrasound at 2.  And everything we left the house for bright and early WOULD be accomplished, before we headed home.
I can be a calm and rational person, at the right time.  But, the right time is NOT after you confirm an appointment at 4:30 PM the night before and FAIL TO SEE IF THE NECESSARY MEDICINE IS ON SITE!
So, I saw the woman off on her tasks to fix what had been broken, and I took the cues of my girl who thought, “We are in Manhattan – Let’s see Daddy.”
We took the shuttle to 53rd street and 3rd Ave.  Then we WALKED to 42nd and 7th.  Just in case there was even the slightest doubt that Meghan needs her wheelchair in Disney – it has officially been confirmed.  The 25 minute walk each way did more damage to her legs than I could have imagined.
Toys R US times square
But, we did get to Toys R US.  Meghan has been there before, as it is one of the stores her Daddy helped light before it was open, and it is so close to his office, but a toy store of that size is a huge thrill nonetheless.
She left with a Merida doll from the movie “Brave.”  Ever so fitting in so many ways.  I knew Daddy would have to take the Barbie size one home with him, so we surprised her with a Polly Pocket sized one when we got back to the hospital.
brave 2
Why did you like this doll, Mom?        
Because YOU are the BRAVEST girl I know.
The shuttle took us back to MSKCC by 1:30.  We promptly bought Tylenol for legs that could barely carry her and went to endure a 40 minute ultrasound.  Then it was back up to the floor for the test.  The medicine arrived – barely, just barely, but it arrived in time so that after an IV was placed, and a super painful injection given – we began the 9AM test at 3:15.
And there she sat, for 2 hours, in her chair.  Reading, playing with her iPad, watching movies.  Uncomfortable.  Exhausted.  Brave.  Courageous.
It may take a week or more to have the test results, and I will pray as I always do, that they return without any evidence of a problem.  But, time will tell, and the waiting game is one we are well practiced at.
So as we arrived home at about 7 last night – 12 hours after we left for the day- we consumed a giant dinner prepared by Daddy, and my poor exhausted girl took some more Tylenol and fell fast asleep.
Only to be woken this morning by the ring of the alarm clock.
run-clock
An 11 AM MRI/MRA of the wrist was waiting for us at 1st Ave and 38th Street.  The June 4th injury never healed, and it was finally time to get some answers.  The doctors we have seen all have differing opinions.  AVM? Arthritis?
When I tell you I have actually lost count of the number of MRIs my girl has had, you may find that odd, but there truly have been THAT many.  We have the pattern pretty much down.
We let the (hopefully) nice nurse pick the IV spot.
courage 2
Of course this time, since it was a scan of her RIGHT wrist and hand, the really solid veins in the RIGHT side were off-limits.  So, after two painful sticks to the left, she ended up with the IV on the side of her wrist.  And even with the discomfort she was in, she listened intently as the camera was placed in the MRI room, and absorbed her directions on positioning.
My cursory question of “How long?”  Was answered with “Less than 45 minutes.”  It’s almost a silly question to ask because I have no watch, no radio, and no means of telling time in the room.  But, somehow it makes me feel better.
Ear plugs in place, the door closed us in, and she headed into the tube.  My hands remained on her ankles, and I could hear the deep breathing.  It was just her and Merida inside the tube now.  Bravery at its best.
couraqge 1
It was 11:25.
It was well past 12:30 when we were told to wait it out while they ran through the images to be sure the doctor saw them.
time-warp
And then it was 12:45, and some time after 1:00 we were taken to another room.  Another room with a smaller tube and a stronger magnet – for a few more pictures.
This doctor, this attending, at the hospital reviewed her images, and wanted more.  This doctor I will never meet, who is not the radiologist who will read the images, who somehow got called by the tech doing the exam.  This doctor wanted more pictures.
So as Meghan laid on her belly in the tiny tube with Merida by her side, she sensed things weren’t quite right.  I gave her an abridged version of my inferences.
Then I chuckled at her response.
If something is wrong with my wrist, how will I do the archery we signed up for in Disney?
We will make it work Meg.  No worries.
And she laid, quiet and still as could be as 5 minutes became 20 before we were done.
So that’s it?  You aren’t going to tell me anything?  I asked the tech.
I am not a doctor was the painful reply.
Understanding they can’t, it didn’t help the growing pit in my stomach.
Your doctor will have the results  Monday afternoon or Tuesday morning.
Meghan got dressed and I held her up as she limped the 6 blocks to the parking garage, an all too familiar summer scene replaying itself. It was 1:45 PM.
Last night I asked when I was going to get a break.
I take it all back.
BEATING COWDEN’S will require stamina and strength I never imagined I could have.
I will continue at this pace forever, and as I wait for the test results I will be buoyed by the Bravery and Courage of my favorite 9-year-old.
brave 3

Overwhelmed

overwhlemed 1

Yep.  Totally and completely overwhelmed.

I know I am not the only one.  But I think sometimes the first step is admitting it.

Maybe it was overzealous to try to synchronize mine and Meghan’s 6 month follow-up appointments to coincide with the first 2 weeks in July and the February break.

My initial attempt scheduled 12 doctors , plus one MRI and one sonogram between June 27th and July 16th, (for both of us combined.)

overwhelmed 2

It has mushroomed to include a Pituitary Stimulation Test and another ultrasound, 2 more MRIs yet to be scheduled, a possible muscle biopsy – pending a conversation between 2 specialists, a full day of work for me one day next week, Physical therapy 1-2x a week as we can fit it, 3 nights a week of swim practice, and 2 dentist appointments (that I PRAY don’t need follow-up!)

So, I waffle in between resenting the loss of my summer, and being grateful that I have July to get all this done.

The entire month of June I salivated for July.  I couldn’t wait for schedule free days.  Now I am frantically overtaxing my shredder as I organize all the tasks I label for “summer,” during the year.  The July calendar makes me nauseous.  Literally.

swim overcome

I mean we might have gotten bored eventually, but we have barely been near the pool.  I say bring on the boredom.

Most of our appointments are in Manhattan.  That can be a 45 minute trip or a 2.5 hour trip – depending on… well, the humidity?  day of the week?  air pressure?  There is ABSOLUTELY no predicting.

We could take the bus.  But that often involves the need for the subway, which I won’t do with Meghan, and lots of walking, which honestly she can’t do.  So, we drive, fill the car with gas, head over a bridge and through a tunnel to a carefully pre-selected parking garage.

And, since there is no predicting, there is always a meal to pack.  Never want to be caught off guard with a hungry Gluten, Dairy, Soy allergic kid.

Sometimes we are on time.  Sometimes we are late.  Always we wait, and wait.

overwhelmed 3

Meghan is the most well-behaved child.  I don’t lie because there is no need.  I am sure she was a gift to me – while we can at times butt heads, her personality allows her to pack a book, her iPad, or something, and sit.  For hours and hours.  I couldn’t pull this off if she was any other way.

But, I don’t know if I would have a choice.  There is no traveling to Manhattan at 4 pm, on a school night.  It just can’t be for either of us.  So we do what we must.

Today, before 8AM she was in the park, running the “fun run” of a local race that has been dedicated to our “Angel Meghan” for over 20 years.  She ran for a quarter-mile – 2 and a half minutes, came in a close 2nd, and has been nursing her knees ever since.

Meghan july413

I am in the basement, shredding, and writing while I wait for my overworked shredder to cool.  Trying to get a few things off the “to do” list.

My head is constantly going – processing new information learned this week.  Thinking.  Asking.  Wondering.  Worrying.

Today is a good day.  Daddy is home.  The ultimate distraction for her.

We had a long talk this morning, me and my girl.  I tried to push her to reach out to some friends.  To go and be carefree like she should be.  Even if its only for a while.  Everyone has something we reminded each other.

I still can’t shake my need for order.  I don’t need a psychiatrist to tell me my obsession with a clean house is tied to the inability to control much else in my life.

Cowden’s Syndrome – our curse, and our blessing.  Sucking away hours that should be spent on the beach or in camp.  Forcing a little love to grow up way too fast.  Torn between my guilt that this mutation came from me, and my gratitude that she saved my life.

I lost my driver’s license today.  Just the license.  It fell out of my pocket.  For $17.50 I ordered a new one on-line.  Here’s to hoping that whoever tries to be me has a strong stomach, and a decent amount of stamina.  They don’t know what they are up against.

overwhelmed 4

The beach… and all her other plans – I will do my best.

Just trying to get by one day at a time.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂
The thought for the day...
The thought for the day…

You Can’t Have a Rainbow Without a Little Rain

rainbow rain

As a young child a can remember hearing stories of rainbows in Sunday School.

This week I needed lots of reminders that I am not alone.  God keeps His promises.

Yesterday we saw Endocrinology at MSKCC in NYC.  They spent an hour and ten minutes preforming a detailed sonogram of Meghan’s thyroid.  She was an angel – calm and patient.  I watched the whole thing, uncomfortable with how much I am able to see on an ultrasound now.  The things we learn through repetition.

It was obvious to me that the many nodules – well over 10 – are still there.  At least three are quite large.  I watched as they were measured, and my “numbers” brain frantically tried to recall the stats from December that had led us to January’s biopsy.

We spent an hour waiting on the ninth floor, the pediatric cancer unit.  And as I have said before, and I will say again, if you ever need to count your blessings, I mean truly count them, I strongly suggest you swing by there.

rainbow not thunderstorm

Meghan played on her iPad as I watched.  Chemo pumps beeping.  Children from 2 to 20, some seasoned veterans, some terrified newcomers, attached as the poison to kill the evil cells drips into their body.  Some sleeping, some resting, some running.  And their parents. Dark eyes.  Worry.  Terror.  Fake smiles.  Bitten up coffee cups.  “Count your many blessings count them one by one…”

“Mom, I am not scared of thyroid cancer.  I am only scared if they don’t catch it early enough.”  I knew what she meant. She went back to playing.

In the doctor’s office there was a moment for us to be relieved, kind of.  The nodules are slightly larger, but are growing slowly.  They are still in that same “precancerous” state, but we are not in imminent danger.  No biopsy right now.  We get at  least another 6 months out of the thyroid.

Then there were the other conversations.  The ones about hormone levels that won’t regulate on lab work.  The MRI that showed a pituitary “diminutive in size.”  The inconsistencies of these tests with her current development.  The statement from the endocrinologist that this lab test (having already been repeated 4 times,) “defies human physiology.”

Yeah, and…

So he drew the labs again.  This time at “his” lab.  And a thyroid panel, and a few other things.

He’ll call me Monday.  Then I will find out more about “human physiology.”

At swim practice last night I met a mom.  She has an only child too, just about Meghan’s age.  And she is BRCA positive. So, after a day of doctors, somehow we were placed in each other’s path last night.  And, I had conversations with a virtual stranger that I probably haven’t had with some of my closest friends.  There are no coincidences.  Of this I am sure.

And this morning – barely able to move from stress and fatigue, salivating for a day of “vacation,”  we dragged ourselves out of bed again.

rainbow snoopy

I packed the bags – always bringing lunch and a few snacks, and we headed out – a little later than I wanted.  As I crossed the bridge I had the sinking feeling that I didn’t have my wallet.  Back across the bridge.  Back home.  Back out.  An accident on the FDR assured me that I couldn’t use the $14 parking coupon I had printed.  Into the $42 lot we went. We made it into the office at 10:03.

The vascular surgeon is uptown.  He has been inside of Meghan’s knee 4 times, so he knows her well.  This time we had less overall pain to report.  But, of course he never felt the pain was connected to the AVM anyway.  So I recounted tales from her PT evaluator, and her swim instructor about how difficult it is for her to run without limping, or to push off to start a race from the block  I had his attention.  The legs have different girth.  The left is undoubtedly stronger then the right, having been spared the AVM.  Do you take her for PT he asked?  Um… constantly.

Fortunately we love Dr. Jill!

We took her out of soccer and dance and put her in swimming.  There isn’t much else we can do.

Oh, and could you look at her wrist?  The one she hurt at the school carnival almost 4 weeks ago.  She was victorious at her quest to climb the rock wall.  Stubborn, competitive child.  But has paid the price since.

For a few days I told her to suck it up.  I admit it.  But it kept going.  Knowing Meghan as I do, she will keep me abreast of every pain – but the SECOND it stops, its like it never happened.  This one wasn’t quitting.  Dr. Jill helped us.  We tried a brace. Then another one.  Then no brace.  No better.

So as I watched the doctor manipulate her wrist I couldn’t help but remember my frustration the day after the carnival, when all of her friends walked around unscathed, and she suffered terribly with pain all over.  I remember thinking how cruel it was that she had to make a conscious decision to suffer in agony the next day – if she wanted to keep up with her friends.

He examined it for what seemed like forever.  Then he asked me who my orthopedist was.  I laughed out loud.  The one subspecialty we have NOT found – is pediatric orthopedics.  So he asked if she had a rheumatologist.  I said we were headed there July 9th.  He said try to move it up, and call him after I saw her.  She needs and MRI of that wrist.

“I don’t think it’s vascular…”  And after that we will get one of the knee – just to be safe.

There went two more days off the summer calendar.

40 blocks away was the geneticist.  He is the one we credit with saving my life.  And I credit the angels with placing him in our path two years ago.

We spoke at length.  He has more questions.  More research.  He has a theory.  He will call me.  He will send me the articles.  The conversation lasted an hour.  He is brilliant.

She hugged him and told him she wants to be a geneticist.  We have a friend for life.

The people training on the  new teacher evaluation system in NYC frequently declare “This is going to create more questions than answers.”  I don’t know why I find the system to be perplexing.  I should be used to it by now.

It rained tonight.  Thundershowers.  They have been happening a lot lately.  Maybe I need a lot of reminding.  The rainbows are there.  The promise remains.  Nothing happens by accident.  God’s timing is perfect.

6/28/13
6/28/13