… some rain must fall.

Last summer we invested in a new roof for the house.  I’ve never regretted it.  Truth be told we had no choice.  There were leaks and dry rot.  All sorts of potentially serious places for significant damage.   Lots of horrendous storms have pounded down on this roof since the summer of 2013 – both literally and figuratively.  But we’ve stayed safe and dry.  I have to figure its some combination of strong plywood, and a well done roofing job, coupled with our strong family bond, deep faith, and our ability to keep laughing.

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The weather forecast this week is pretty awful.  And I started thinking about how, “into every life some rain must fall.”  And I started to wonder, whether maybe we’ve actually had enough rain.

Cowden’s Syndrome brings its own share of cloudy, overcast, generally awful days.  And life, well it can get dicey and complicated even without Cowden’s Syndrome.  This year has been wild.  Full of so much sadness, and hurt, and sorrow.  And in between there peeked in some fun, happy times.

rain 2

This month has been tricky.

These last 2 weeks….

I’m really starting to think it might be time to consider an ark.  I’m not wallowing.  Nor do I think we are the only ones buried enough to need that ark (we’ll share,) but wow.  Just, wow…

rain 5 ark

Two weeks ago tonight we rushed Meghan to Lenox Hill Hospital for emergency surgery on the AVM in her right knee.  The 50 ccs of blood were removed from the knee-joint, and by Wednesday we were sent on our way.  Thanksgiving weekend was spent home.  Low key.  Leg up.  Resting.

We had goals.  All geared towards December 8th.  Goals set by the medical team.  Swim practice was to begin again tonight.  And Mom, FYI – goals are different from plans… 🙂

We slowly weaned off the crutches, and the pain medicine.  We moved to an ace wrap as needed.  By last Monday the 1st she went to school still in pain, but unassisted.  The swelling was going down.  The healing had begun.

But by Friday she couldn’t do it.  Had to stay home because of the pain.  The swelling looked a little off too.  More rest.

rain 1

Sunday she woke up late and come down the stairs declaring the pain was worse – and “different.”  The knee looked horrendous.  And very similar to its pre-op state.  More resting.  Some pictures.  Some brainstorming.

ER 11/24
ER 11/24
Living room 12/7
Living room 12/7

All the while Allie, our oldest dog was having troubles of her own.  Allie, lethargic for a bit – collapsed on a walk.  Felix called me to pick him up carrying 70 pounds of dog.  Off to the vet for abdominal x-rays and a negative test for pancreatitis.  There was no discrete mass of the x-ray, just some shadowing.  They decided to try to treat for pancreatitis despite the negative test.  There aren’t too many other good options and I am worried.

And so we got medicine for Allie, and got her boiled chicken and rice for her bland diet.

And we took pictures of Meghan’s leg and elevated the knee.

Today we got up early to give Allie her medicine together.

Then Meghan dragged her painful, aching leg around school until I could get us an appointment.

1:30 arrival at Lenox Hill.  Sonogram initially showed no blood.  Then, wait for it…. there it is.  But no obvious spot its coming from.  Shocking really.  Could it be residual from the procedure two weeks ago?  It looked to be about 5ccs.  Nothing compared to the 50, but I remember a time less than 5ccs of blood in the knee-joint freaked them all out.  Now all of a sudden – we’ll just wait and see.

They used words like “discomfort,” and “irritating.”  She used words like, “excruciating.”

rain 3

Not the first time we haven’t seen eye to eye.  But he’s all we’ve got.  One of very few doctors in the north-east to operate on these in kids.

I get not racing back in.  I do.  But validate the kid for the love…. I know she’s super sensitive, but that just means she feels EVERYTHING, INCLUDING the stray blood in her knee.

Wrap it.  Elevate it.  Put swim off another week.  (Tough talk from the guy who initially said she wouldn’t even need crutches.)

In the car Meghan told me to get my Christmas shopping done.  Just in case.  She hopes she’d wrong – but it doesn’t feel right.

My money’s on her- and it’s a bet I hope to lose.

Allie, she’s super mushy.  Who knows?

photo 1 (5)

Online shopping here I come.

I’m done with the rain.  Really over it.  Rainbow anyone?

rainbow real

Avocado and Isagenix – What’s in YOUR suitcase?

It’s been almost two weeks – a long time for me not to write.  My head is spinning with things I need to get out in my blogging “therapy” sessions.

As I sit in Orlando International Airport, delayed by hours on the sunniest evening all week, I find myself reflecting on the week that was.

Even though we have been at Disney 7 years in a row, and even though we probably should have stayed home to lick our wounds this year, we threw caution in the wind and decided there would be plenty of time to make money, and time to make memories isn’t always there.

Plus, in 2014 alone there was that thyroidectomy in February that threw my girl’s body into some wild unbalanced state, and that week in May when we learned all about gastritis.  (Caused by the pain medicine she had lived on for years.) So after spending months trying to get her stomach back in balance, and juggling the gluten, dairy, soy free, and largely preservative free diet, with the new restrictions of no citrus, no chocolate, no tomato, we contemplated cancelling the trip.  But we knew that would seem more like a punishment than a precaution.  So the reservation held – August 5 -12.

In the week leading up to the trip time seemed to fly by.  I barely got her settled with enough clothes, got us a functional suitcase, and got us packed in time.  And as we were packing I began to gather food.  See, when you travel with a kid with food allergies, you don’t travel without food – ever.  Even though Disney is “the happiest place on earth,” and even though almost every chef we encounter is masterful at creating meals to please her very restricted palate, you still need to pack the “staples.”  There has to be a supply of dry fruit, cereal, pretzels, applesauce, cookies, and bars.  In the past we also always packed tomato, and barbecue sauce too.  Every morning we would fill small containers and have it to flavor anything dry along the way.  Except this year tomato was equal to painful reflux, and we weren’t about to try it out as we traveled.

So, we went to the next best thing – avocado.

avocado

 

I have never been a huge fan, but my Puerto Rican husband gently introduced healthy protein into her diet and it was so well tolerated.  She liked it to moisten food, and there were plenty of days she ate a whole one.  So, into the suitcase went a container full of 8 avocados.

Use what you know.

And in another container nearby were several packages of Isagenix shakes.  Those, I had packed with intention of using them myself.  So glad I did.

When we arrived in Orlando Tuesday the 5th after a 6 AM flight, it was 8:30.  We rode the Magic Express and got to the hotel by 10:30.  At 10:45 the luggage arrived, and by 11:20 we were unpacked and on the way to the Magic Kingdom.

And find the Magic we did.

We spent the day riding, and laughing, and watching and taking in all the wonder around us.  We had lunch at a trusted favorite, the Liberty Tree Inn, and the turkey, stuffing, mashed potato and gravy were prepared to perfection.  Her stomach was happy.  We were happy.

2014disney1

Dinner was with some old friends at the Contemporary, and we willed the time away searching for “Hidden Mickeys.”  The “Fab Five” greeted us, and the chef took us to the buffet.  I tried to choose carefully, as the selections seemed a bit questionable.  I was assured they were within her dietary restrictions.  And there was the drink.  We asked for it diluted, as it wasn’t her normal fare.  But he was busy and I suspect by the third glass the waiter had forgotten to dilute it.  And there was the GFCFSF sausage… and…

2014disney2

By the time we sat for the electrical parade we were all tired, but she said she felt something in her throat.  She asked me for food, and even as I handed over the pretzels I should have known better.

2014disney3

She slept fitfully.  So much so that I kept waking to check on her.

“New room… new place.”  I kept telling myself…

And in the morning when we got up to leave we just about made it to the lobby when she said she couldn’t go.

“Houston… we have a problem.”

We exchanged those “uh-oh” glances – Felix and I.  And we followed her to the room.

And barely did she make it in the door then the familiar violent vomiting from May returned.  So much.  So forceful.  Like her body was not going to stop until it got rid of every single offending morsel in her body – whatever it may be.

It went on for hours in our hotel room in Walt Disney World.  And every time it seemed to calm and we tried water, bread, pretzels… it all began again.

We called our GI from home who instructed rest.  And we looked at our girl laying so still and so sick on the bed, and we searched out the travel insurance brochure.  After two hours on the phone with more people than I care to count, we arranged for a doctor to visit the hotel.

And while we waited the staff had seen my tears, my desperation, and prepared a bag with some balloons, and coloring books, and pins and UNO cards to pass the time.  There are good people.

But by then – at 5 – she had been without food or drink for 5 hours and was starting to look better.

He was amazing, and unusual, and smart, and introspective.  And he sat with us for a good hour learning about Meghan.  Then he sized up that she was not dehydrated.

“What do we do?”

“Go with what you know.”

Not so easy hundreds of miles from home.  But, she was hungry.  And there were avocados.  And my eyes hurt from crying in absolute frustration that we had just breached her forever “doctor free” zone.

Then he asked what she drank and we said “Coconut Milk.”  And just like that he was out the door headed to a whole foods 6 miles away.  HE took money only for the milk itself, not for his gas or his time.  And we had options.

so delicious

WHO does that?  This stranger… this “standby doctor” so moved and so interested in helping…

So there was avocado, alternating with coconut milk at very deliberate intervals.  And once the avocado held itself in place we had a few options.

“Can I have a shake?”  MUSIC TO MY EARS…

isagenix shake

A half shake in 8 ounces of coconut milk.  Followed by a half of an Isagenix meal bar.

By 9 she was well enough for a ride around the hotel.

By the next morning we cautiously resumed our trip.  With Isagenix, and an avocado in my backpack all day.

Felix said we should call her our “rubber band-” stretched until you think she’ll break, then she finds a way to spring back!

 

Future Doctor, Meghan

If they would just listen to Meghan.

I mean really listen, and stop dismissing her.

Since before she could talk we have been working to help this kid become more aware of her body.    She can troubleshoot what works for her.  She can tell me what foods and medicines help her or hurt her.  Every day she becomes more keenly in tune with herself.  Its necessary.  That is how we keep her healthy.

My heart always gets heavy for my friends whose children, despite everyone’s best efforts can not articulate their needs, pains, desires, or emotions.  Those are the situations where doctors might miss something- even if they are trying.  Those poor children might suffer needlessly if no one can determine the source of their discomfort.

But not Meghan.  If you will listen.  She will tell you.  If you pay attention.  You will understand.

If she hurts- the whole world might know.  If she doesn’t hurt anymore, even 5 minutes later, its like it never happened.

That’s it.  Plain and simple.

So when she hurt her hand June 4th, I kept waiting for it to get better.

I played tough for a few days, but it still hurt.

Then we tried ice, heat, brace, no brace, different brace – but the pain persisted.

Dr. Jill, our Physical Therapist kept saying, “I think it’s vascular.”

Meghan kept saying, “It pulses like my AVM.”

And on we went – to the vascular surgeon, for the MRI/MRA, to the orthopedist, to the local hand surgeon.  Each one finding a reason to dismiss her, and this pain that persisted.

Pain doesn’t persist.  Not like this.  Not with her.

And, when you have Cowden’s Syndrome, any pain that persists more than 10 days consistently really should be evaluated.  You never know where those tumors may grow.

But the MRI, the three hour MRI with 4,000 images was negative. (Although I still have my doubts.)

And, Meghan calmly told the vascular surgeon she thought it was an AVM.  He said no.

As the pain mounted over the weeks that followed, and we bounced through other routine follow ups that seemed to swallow up our summer, Meghan took solace in Dr. Jill.

You can’t put anything over on Dr. Jill, but she knows kids, and she knows Meghan.

“Look at this,” she said to me.  “It has its own blood supply.  That’s why it stops hurting when she puts pressure on that mass.  She is cutting off the blood supply.”

watch me

Meghan would smile, knowing she was understood – at least by someone.

“Vascular pain goes up the arm, orthopedic pain doesn’t,” she would almost  mutter to herself.

And I knew if they were BOTH sure, then I was sure they were right.

I emailed her oncologist, and her genetecist.  I sent them pictures.  “Biopsy those,” I was told in no uncertain terms.

So Dr. Jill wrote a detailed professional letter to a local orthopedist.  I am still not sure he understood all the words.

Then there was the local hand surgeon, who read the letter, and just spent the visit looking perplexed and bothered.  The MRI report was negative, his Xray was negative, and there was this bump below her middle finger.  He sent us away – apologizing for not helping, but convinced there was no need for surgery.

That was the day Meghan coined the phrase “Donkey Butts!”  And I couldn’t blame her.

donkey-butt 2

I went right home from that visit and sent a desperate EMail to the oncologist again.  This time I asked for a referral.

She is a woman of few words.  Her reply was a link, and the words “Go here.”

hand 2

So, I called and made an appointment.  They took our out of network benefits.  We got in the day before vacation.

He looked at Meghan.  He talked to her.  He sent her for more Xrays.  They were negative.  Then he looked at her hand again.  He told her that he knows all about kids and how well they know their bodies.  He told us he treats a few boys who grow bone instead of soft tissue tumors.  He told her that the boys ALWAYS know where the problems are.  She brightened.

Then he drew a very logical picture of the hand, and traced out the main ligament and tendon.  He showed the connection from the soft tissue tumor to the painful wrist spot.  He let her feel it, and he told her she made sense.  She smiled a huge smile.

Finally a doctor who DIDN'T remind me of this one!
Finally a doctor who DIDN’T remind me of this one!

The he said to us that even though the Xray is negative, sometimes surgeons have to use their heads.  Clearly the tumor on her hand was causing trouble.  Clearly it had to come out.  Exactly what that would mean once he got in there would have to remain to be seen.  Relaxed and encouraged that someone was using their head, we scheduled the procedure and left for Disney.

Disney had its ups and downs, and one of the struggles was the frequent hand and wrist pain. Meghan is in pain so often, she can differentiate between the chronic pain, like her hips and knees, and the pain that she can’t stand, like her wrist and hand.  Chronic pain is absolutely exhausting.

Today was the surgery.

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We went to a LOVELY outpatient facility on 42nd Street.  The place was clean, the reception was smooth and effortless.

The nurses were darling, every one of them.

The anesthesiologist instilled comfort, and the surgeon, Dr. R was warm and calming.

The procedure lasted longer than I expected – almost an hour and a half.

time-warp

I wasn’t surprised to hear the words that have become normal. “It wasn’t exactly what I imagined, but I am pretty sure I got it all.”

A soft tissue tumor, with roots, AND an AVM (arteriovenous malformation) with its very own blood supply!

So many thoughts went through my mind – including, “SHE KNEW IT ALL ALONG!,”  and “THANK GOD FOR DR. JILL!”

I was grateful for Dr. R, his patience, his trust in Meghan, and his ability to get it done.  I was also instantly tossed into a new level of worry.  See, all along they have been insisting the AVM in the knee was an isolated incident.  I shouldn’t worry about more cropping up.  Well one just cropped up.  Game changer.

I was thinking about the rock wall she climbed June 4th, and even after all this turmoil, I am still glad she did it.  Although we now almost undoubtedly know that the AVM was under the surface all along, and the bruising her hands took caused her body to “hyper heal,” and likely led to more blood being pushed towards the AVM.  The soft tissue tumor erupted some time later.

While the exact sequence of events doesn’t matter, a few things do.

Meghan and Dr. Jill are really intuitive.

AVMs can take place in multiple spots.

Dr. R had to scrape the scar tissue off the ligament, and tendon and nerve in the hand.

Meghan will need quite a bit of therapy (after 9 days of keeping the hand wrapped) to get her mobility back.

I absolutely can not wait to get the pathology report and share it with a few doctors who blew off my girl.

And, most importantly – NEVER DOUBT MEGHAN!

meg doctor kid

A “Guest Blogger” for our 200th Post!

post_200

I wanted to make the 200th post of “BEATINGCOWDENS” extra special, so I asked my (almost) ten year old daughter Meghan to be the Guest Blogger!

1. How has Cowden’s Syndrome changed you? 

Cowden’s Syndrome hasn’t changed me.  It has always been a part of me.  Knowing I have Cowden’s Syndrome has only made me more aware and more prone to understanding my body.

2. What are some things you want people to know about being a kid with Cowden’s Syndrome (PTEN Mutation)?  

It’s hard not to be like other kids, but I am really glad all of the problems are found earlier than later.

3. What makes you glad you were diagnosed?

My diagnosis forced me to look at what was good for me and what wasn’t.  I had to give up soccer and dance, but I LOVE swimming, and I feel like I am getting better at it every day.  I am always trying to improve physically because I need to stay strong.  I am glad I found a way to compete with other kids, and not always be last.  I am also building swimming friendships.

Spring 2013
Spring 2013

4. What makes you sad/scared/ or worried you were diagnosed?

I feel more vulnerable, and sometimes a bit weaker because I can’t do everything the other kids can do.  I can’t run and play outside like them.  My weak immune system causes me to get more viruses, and I worry about thyroid cancer too. I try to find the positive in every negative and I don’t let worry get the best of me.

5. What is the most frustrating part of Cowden’s Syndrome?

I go to so many more appointments than any of my friends, and lots of times we have to wait forever.  I keep busy at my appointments with my books, my iPad, and my Rainbow Loom.  It is taking up the first few weeks of my summer vacation, and I would rather be home and bored than running back and forth to Manhattan every day!

6. Do you have any kids that you can talk to about your diagnosis?

I feel like I have three kids I can really talk to that understand.  My friend Conner is in Colorado.  He also has Cowden’s.  He is about my age and really funny.  Also, I can talk to my friend Georgia in Australia.  She is also about my age, and even though we are really far away from each other, she is a very nice girl.  I am glad I know her.  I have been able to FACE TIME with these far away friends.  Sometimes the time difference gets tricky, especially to Australia.  The first time I saw Georgia it was 10PM here!  We talked for over an hour!

I also have a friend on Staten Island,  who I feel like I can talk to.  Even though its only been a short time, I hope our friendship continues to grow.

7. What do you hope to do when you grow up?

When I grow up I want to be a genetecist.

I have always wanted to be a doctor!
I have always wanted to be a doctor!

I feel like I will know a lot about it.  I also want to do agility training for dogs.  Right now I have two dogs that I love very much, Allie, and Lucky.  I always want to have dogs.

Lucky and Allie
Lucky and Allie

8. How do you plan on using your diagnosis to make a difference in the world?

I plan on making all rare diseases more well known.  I want to do a movie night at my school and raise money to donate to The Global Genes Project – they help all rare diseases.

I want more people to understand rare diseases, and do more research so there can be a cure.

But, all that starts with awareness.  Last year I asked my parents for something to wear, a symbol (like a pink ribbon) that would represent me, and my struggle with Cowden’s Syndrome.  The Global Genes Project uses a denim ribbon and the saying “Hope It’s in Our Genes.”  I really like that symbol so Mom’s friend made it into a necklace for me.  It is hand engraved, and says “First of its kind.”  It is really special.

A denim cause ribbon, crafted after the Global Genes Project's slogan, "Hope it's in our Genes!"
A denim cause ribbon, crafted after the Global Genes Project’s slogan, “Hope it’s in our Genes!”

Mom and Dad have one now too.  One day I hope to look across the room and see someone else wearing one.  I want the denim ribbon to be as popular as the “pink ribbon”

********************************************************************************************************

Hi. I’m Meghan.

 I am really excited to be Guest Blogger.  Life with Cowden’s is hard.  I try to focus on all I can do, and like to do – especially swimming and reading.  I’m an (almost) 10 year old.  I wanted a normal life, but really when I think about it my life is the only one I know.   Even with its cons I’m happy with it.  Cowden’s Syndrome is a real pain,but its brought out the best in me.  People need to be aware of these diseases.  It feels great when someone understands you a tries to lend a hand.  

Thanks For Reading!

Love,

Meghan

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…

The Carousel of Life

How can you tell if it’s really progress?
When we were in Walt Disney World, one of the rides we went on was “The Carousel of Progress.”  Now I must admit this isn’t one of my all time favorites, but it does serve to cool you on a hot August day, and provide some food for thought.

For those of you who have never been, it starts out in the early 1900s and has several scenes detailing progress through the years.  Of course, with all progress, there are a few snags along the way.

The state of the art kitchen in the mid 1900s, looks nothing like the state of the art kitchen in the 21st century.

 

 

 

 

 

 

And I think the lesson to be learned by those of us cooling off in the comfortable Air conditioning, is that with every new change, we lose a bit of the old.  It is often beneficial, and frequently necessary to improve, but we need to keep an eye to where we have come from so we don’t lose ourselves.

So why was this on my mind – aside from sorting out the Disney Photos?  Today was a doctor day  – again.

Today we took a 2.5 hour (should have been 75 minutes) road trip to Long Island to see Dr. E.  People ask me all the time who he is, and why we see him.  Well, the truth is, he is kind of our “think outside the box” doctor.

We first met him in 2005.  Meghan was severely delayed in many areas.  Her behavior was at times scary, as she was having fits of rage that were tough to manage.  She was bloated, and her belly was in terrible shape.  She wasn’t speaking much, and her speech and occupational therapists were starting to whisper “autism” to me.

Not feeling at all like that was where she was, we headed to see Dr. E, a DAN! (Defeat Autism Now!) practitioner.  He had been a pediatrician for over 20 years and had recently made the change to treating children with biomedical interventions.

It was a scary commitment to see such a doctor.  There was no insurance at all, and the initial out of pocket fees were frightening.  But when we sat and spoke with him, and he told us about the ways he was going to help Meghan – he meant it. 

It is 7 years later.  My daughter is a far cry from that sensory sensitive, sickly, silent, little girl we brought him in 2005.  We have gone through countless lab tests, various diets, vitamin and mineral supplements, prescription and non prescription medication.  He has seen us through her gall bladder attacks, and has answered my texts and Emails at the most obscene hours.

Progress.  At a cost.

Not just a financial cost, but an emotional one too.  And now we hit a crossroads again.  Progress is at a standstill in many ways.  (Not in the bright, articulate, funny girl, but in other ways people don’t see.)  The strep is returning to life on a regular basis.  Her development is not agreeing with her hormone tests.  Her belly bothers her, and she needs medicine to help her sleep.

I spoke with him at length today.  He wants me to see a very intelligent nutritionist in NJ for a very specific test.  It will uncover some of the “mysteries” we are missing, he says.  We are past the point where we can look at her and treat her.  She appears well, but there are too many things that don’t make sense.

What about the Cowden’s I ask?  What about the PTEN?  Isn’t that the cause?

To which he gives me the honest, “I don’t know.  There isn’t enough research.” 

But, he insists what he does know, is that we will gain a wealth of information from this test.

It is costly, and there is no guarantee the insurance will cover it.  But, she is worth it, and we will likely set it up.  The question is when?

School starts in a week and a half.  I have 2 appointments tomorrow, she has 2 Monday, and another Weds.  There comes a point where we have to stop running like this.

The Carousel in Ocean City, NJ

When I was a little girl we vacationed in Ocean City New Jersey.  I used to like the carousel, but I wasn’t as daring as my sister – who would lean over and reach out for the rings.  I liked to hold on – tightly.

Some things haven’t changed.

I think about this carousel as well, moving in circles, sometimes seeming to get nowhere.

I find all these appointments all consuming, almost overwhelming.

Then I stop and think – it’s not about getting there, it’s about enjoying the ride.

Progress will come…