Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 16, diagnosed with Prader-Willi Syndrome and Weston 19, diagnosed with Autism/Asperger's/ADHD. It's the ups, the downs, the joys, the sorrows and most importantly, the beauty of living a life less perfect, a life more meaningful.




Wednesday, August 15, 2018

Hypoventilation and PWS

OK, so after we discovered Nick needed spinal surgery, 
we raced from one specialist to another, 
in an attempt to clear him for surgery.

Our first stop....Pulmonology.
Our new Endocrinologist, Dr Koren,
who is located at Mass General for Children,
recommended another Mass General physician
named, Dr. Bernard Kinane.

We found him to be a kind and brilliant physician
 with a wonderful sense of humor.
Naturally, he quickly became one of our favorites.


Dr. Kinane performed a variety 
of pulmonary function tests on Nick.
One of these included:
 placing Nick into 
what looked like a giant glass refrigerator
and having him breathe into a large plastic tube.
again and again and again.

It took me, Pete and two assistance to 
convince Nick that this was a fun thing to do.


There was lots of huffing and puffing
and Nick quickly began to tire.
But true to Nick's ability to persevere
under extraordinary conditions,
he did it!

Phew.
We were then escorted into the examining room,
where Dr. Kinane explained to us that Nick
had a yet another new diagnosis.

Say what?
This one, he said is called hypoventilation.

This is a condition where the body breathes at an abnormally slow
rate causing a build up of carbon dioxide.

It is, as he explained, very common in children with low tone
and central nervous system dysfunction.
It is also very common in children diagnosed with PWS.

It was urgent, he said, that we perform
an overnight sleep study, since sleep apnea and other forms
of sleep disordered breathing are also common in PWS.

He did explained that there was some good news on the horizon.
He said that he was participating in a clinical
trial utilizing heart pacemaker technology to treat
sleep apnea and hypoventilation.

He suggested that Nick would be a perfect candidate
for such a procedure.
After, of course, we get him through all of this...



Saturday, August 11, 2018

Scoliosis, Kyphosis and Spinal Fusion Surgery.......Oh My

Now that you've learned the good news, 
let's get caught up on Nick's growing list of medical issues.

Pull up a chair, and have a seat,
this is gonna take a while.

It all starts with Nick's spine.

Welcome to Orthopaedics 101

Scoliosis is a condition where the spine becomes shaped like an S
Kyphosis is a condition where the spine becomes hunched forward 

Nick has both.

When Nick was an infant, 
and first diagnosed with PWS,
one of the first specialists we visited
 was Orthopaedist, Dr. Seymour Zimbler.
He was a kind and gentle man
and truly an expert
on the care of children diagnosed with PWS.


For many years, he treated Nick for scoliosis, hip dysplasia and flat feet.


He taught me a lot about PWS
and how it effects the body.
He explained terms like:
 ligament laxity, hip dysplasia and hypotonia.
He said that due to my son's diagnosis,
he suffered from low muscle tone throughout his body.
He told me Nick would require ankle/foot orthotics or AFO's.


Nick's muscles, he said,
 are supposed to develop equally in strength
 on either side of the spine
to ensure proper alignment of the spinal cord.
Since my son's muscles were weakened,
it would not be unusual to see an uneven pull on the spine
and thus the development of scoliosis.

In fact, he said, ALL of his patients with PWS
experienced some degree of scoliosis.

He said that I should prepare myself
for Nicholas to undergo spinal fusion surgery
 when we became a young adult.

I never forgot those words.

But deep down inside, I thought if we were vigilant,
I thought if we followed the bracing guidelines,
we could dodge this bullet.

But despite our super human efforts
and the assistance of some amazing bracing specialists,
Click here to read about Nick's Franklin shell.

I was wrong.

Over the last few years Nick's scoliosis has worsened significantly.
It has begun to effect his ability to stand, walk and breathe.
He experiences constant and significant back pain.

This sudden increase in curvature,
has coincided with a decrease in his growth hormone dosing 
but that it is a story for another time.

Dr. Zimbler has now retired.
Our new surgeon, Dr. Glotzbecker
has suggested that the time has come
 for Nicholas to receive the surgery.

In fact, all of Nick's specialists agree.


If you look at Nick's shoulders,
you'll see that the right one
 is noticeably higher than the left.

Spinal fusion surgery is an 8-12 hour procedure
that is performed to straighten the spine.

Here's what it looks like:


This is a complex operation for a healthy patient, 
Nicholas, is, as you know, complex.

Because of his medical complexity
 we were required to visit with the following new specialties:

Pulmonology
Hematology
Sleep Study Lab
and Complex Care
 who will coordinate all his specialists during the procedure

We were also required to perform a "stim" test
to rule out central adrenal insufficiency.

But more on this to follow...

Nicholas is scheduled for surgery on September 10.

He will be transferred into the ICU after the procedure
then moved to the Complex Care Unit
for further observation.

He will be in the hospital for about a week.

Then a lengthy recovery at home
until he builds up enough strength to walk on his own.

If you are a follower of our blog,
you know that we are no strangers to 
medical procedures performed
at Boston Children's Hospital.

I guess you could say
we are frequent fliers.

And while I have complete confidence in the compassion
and profound ability of some of the best surgeons in the world;

I do not enjoy dancing this closely with the other guy.

Artwork by Choboroy

Tuesday, August 7, 2018

Wishing

OK, so where do I begin?

How do we catch up on over a year of blog absence?

Like the mythical figure of Sisyphus,
how do I describe the absurdity of this life?
And our rebellion against it.


Perhaps I should start with a good story.




As you know, my son, Nicholas is medically complex.
But more on this later.
Parenting a child diagnosed as such
requires a kind of "special forces" mentality.


I negotiate, advocate, educate 
and downright intimidate 
just to ensure he receives the most basic of
 medical, insurance and educational services.

This prolonged and sustained level of hardcore advocating
 becomes a way of life for a special needs parent.
And so fighting has become as natural to me as breathing.


So, you can imagine my surprise, 
when Nicholas qualified, 
 for the Make-a-Wish Program.
No negotiating
No advocating
No educating
No fighting.!


Just a ringing phone one bright winter morning.

"Hello Mrs. Peters, this is Sarah, from the Make-a-Wish Foundation.
I am happy to inform you that Nicholas has qualified for our program.
We would like to send out a team to your home
so that we may begin the process of creating a wish for Nicholas."

Excuse me....! What did you say?

In fact, in our house, when the phone rings, everyone runs.
If it's ringing it probably means:
either a physician is calling with more bad news
or our insurance company has dropped us for the one billionth time.

I was speechless....and choking back tears;
unable to answer this sweet young woman who was waiting for my reply.

"Mrs. Peters?"

"Yes, I'm here," I said.
 "I am not used to receiving this kind of telephone call."

"That's OK," she laughed,
"this is the kind of response I usually get from parents
and one of the reasons why I love doing my job."

"I don't know what to say." I told her.

"Don't worry about anything," she said, "we will arrange for everything."

True to their word,
Make-a-Wish quickly sent out a team
 to begin the process of selecting a wish for Nick
He could select either:
 a visit with a famous person,
 a trip to a desired destination
 or a gift he would like to purchase.

We had some difficulty deciding what to do. 

Nick's favorite person in the entire world is Dora the Explorer. 
Kinda tough to visit with a cartoon character,
so that was out.

The usual trip to Disneyland was far too long of a flight
 and much too much sensory overload for the slow-processing Nick. 

And things?
Well it's backpacks and candles.....and Lord knows we have plenty of those.

After much discussion we decided that Nick loves to travel,
so perhaps we should start there.
Pete mentioned that he and I had honeymooned in Bermuda.
 And suddenly.....that was it.

We decided to plan a visit during the off season,

So, in April, the Peters family headed off to Bermuda
.
The first flight ever for both Weston and Nicholas.
Their first visit to another country.

The trip started out in luxury.


We began our adventure
with a stretch limo that picked us up at our front door.
Weston's jaw nearly dropped to the ground
when he saw the gleaming white monster glide silently up our driveway.


Nick was more impressed with the twinkling lights inside the vehicle
that changed color continuously while we drove to the airport.


We flew out on JetBlue Airlines
on a glorious sunny April morning.

We managed to avoid the insanity of the Boston airport security check-in.


I called TSA in Boston a week ahead of our trip.
 I explained that I would be traveling with a child 
diagnosed with many complex issues.
They arranged for an agent to meet us at the gate.
She made sure we were fast-tracked past the long lines
 and toward a separate special check-in crew.

  
They were well-trained in dealing with special needs children.
They were accommodating and kind.
They explained everything to Nicholas,
making sure the entire process was special-needs-friendly.
Nick whizzed through it like a breeze.
Pheeeww….! 


Next hurdle, the plane.
But once again, Nick got special treatment
and was the first aboard.
He was allowed to meet the pilot.
Who invited both children into the cockpit
 to check out the airplane controls
I'm not sure which son was more impressed.

The flight was a short one
about an hour and a half,
 from Boston to Bermuda
The snacks and inflight movies occupied my children
and it wasn't long before we arrived in Bermuda.


An island filled with plenty of
pink hotels, palm trees and a multitude of mopeds.


We arrived at our hotel.
The Pompano Beach Club.
The manager was a native of Boston.
He provided us with lots of extra special attention.
And ensured the boys had the time of their lives.
Even installing a brand new air hockey table inside the game room
for their enjoyment.


We stayed in two end unit rooms
 where you could literally do a backflip off the hill
and into the aquamarine clear blue water below.



Our view to the right


It was a very short walk from our room to the pool and hot tub.


The poolside bar.


Where we ate lunch every day.
And got hooked on Bermuda lemonade.


Kinda cool, they had these lemonade stands throughout the hotel.


We ate our meals in several of their stunning dining rooms.
It was a little noisy at times but we ate early in the evening
and brought along Nick's head phones.

What I loved most was for the first time in almost 20 years,
I didn't have to shop, cook or wash dishes while on vacation.
oorah!


And of course in the lobby, Nicholas found one of these.....


It even had a clicker....!
By the end of our trip,
when the folks behind the front desk, 
heard Nicholas approach the lobby
they would hand him the remote control
without him asking!
To Nicholas...this, was something special.


Of course leave it to Nick to find a few fury friends
Pecalo and the shy grey kitten


Nick spent much of his time soaking in the hot tub


Weston spent much of his time fishing off the jetty


And hanging outside his room
Mr. Cool


Honestly haven't seen him smile so much, ever!.


Pete?.....he was like a new man.


Me?  I spent much of my time here.


My view to the left


Behind me were some rocks,
where Nick and I found
Puff the Magic Dragon's cave!
Or at least Nick thought so....!


The hotel was stunning.



With lots to do and see.
But we still took a few day trips.

One to the Crystal Caves.
Where you headed down, down, down into this large cave.

Where you see some very impressive stalagtites

And underwater stalagmites


Weston was very impressed with the show.
He was very eager and engaged,
asking the tour guide lots and lots of questions
making many of the tourists laugh endearingly.


Nick wasn't thrilled about a deep dark cave,
so he stayed above board with Daddy collecting his maps.


mini me with my tall sons


fun-filled days


filled with adventure
(Weston fishing)



exhausted evenings


 magnificent sunsets

But true to the Peters' family way of life,
the trip was not without incident.

Would you expect anything less from us?

We said our sad goodbyes to the friendly staff
 who had become like family to us. 


We headed to the Bermuda airport.
Unfortunately,
 they were not as well prepared as TSA Boston
 in accommodating children diagnosed with special needs 
through the security screening process.

One of the guards grabbed Nick's Paw Patrol backpack
right out of his hands
without explaining what he was doing.
Nick freaked out and screamed at the top of his lungs:

"FUCK YOU SECURITY PEOPLE...!"

I thought for sure we were about to be escorted into a Bermuda prison cell.
Never to be heard from again.



I patiently explained to the guard 
that Nicholas did not understand
what was happening to him.
I explained that he was cognitively delayed.
I explained that they needed to tell him what they were doing.
Nicholas began to cry.

The security crew was dumb-founded.
They continued with their invasive search of our distraught son.
They were either unwilling or unable to listen to my suggestions.
And so, once more...

"I HATE YOU FUCKING SECURITY PEOPLE!"

Nick screamed

Pete and I stood back and waited.

 We wondered if we were headed to prison or back to Boston.

Without further hesitation,
we were quickly processed through the line
and delivered quicker than you can say
"get this screaming kid outta here"
 to the JetBlue gate
where the plane was headed to Boston.
Phew...!

We arrived home to freezing rain and drizzle.
It was early April so the trees and flowers were not in bloom
Everything looked dreary, cold and brown.


To lift our spirits,
we were picked up in Boston by another stretch limo.
But all of us were quiet and thoughtful 
as we drove home in the rain
already missing our lazy days
and glorious nights on the tropical paradise
of Bermuda


Wishing we were still there....

We are forever grateful to the Make-a-Wish Foundation.
It is impossible to thank an organization for saving a family and its sanity
But that is exactly what they did.
We had the time of our lives.
We will treasure many precious and beautiful memories
that would never have been possible
without their kind and generous donation.
We are so very grateful.



Please consider donating to this incredible organization.
They truly saved this family
and made a tremendous difference in our lives.

Visit their website at: www.wish.org