Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 15, diagnosed with Prader-Willi Syndrome and Weston 18, 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.




Friday, October 28, 2016

Monkey Business



OK, so was I right about the Red Fire Monkey Year or what?
click here to read

Holy shit!

This year has been a steady stream of

turmoil and transition

intensity and upheaval

passion and predicament.

As I mentioned dear readers

monkey years bring chaos

but also,

they bring some much needed change.

The tornado

may drop you in a new and unfamiliar environment


but the journey may prove to be a magical one.

Have faith ye fine readers.

All will be well.


The monkey almost always lands on his feet.

Wednesday, October 26, 2016

What, Me Worry?


I couldn't resist the MAD Magazine reference,
since their anti-political outlook
seems particularly relevant these days

Anyway, Nick is headed to Boston Children's Hospital on Monday for a colon manometry procedure and I am worried.

What is colon manometry you ask?

It is a procedure that places a catheter into the colon and measures the pressure of the contractions that help move food through the bowel, evaluating gut motility. Since Nicholas has been diagnosed with low muscle tone, perhaps it is not surprising that his colon "muscles" are not performing adequately and he suffers from issues related to chronic constipation.

Anyway, I had been doing pretty good at keeping calm and preparing for our upcoming stay.

That is until I began to receive calls like this one from Children's:

"Yes, hello Mrs. Peters, this is Martha from Boston Children's. We know that Nicholas suffers from anxiety and were wondering if you would prefer if he received an NG tube for his med delivery?"

"Say what...?"

or this one...

"Hello Mrs. Peters this is the Motility Department over at Children's and we would like to reschedule his appointment to an early morning time frame since he suffers from Prader Willi Syndrome."

and finally

"Hello Mrs Peters, this is Boston Children's Hospital calling to ensure you received the two day cleansing procedure for Nicholas' upcoming procedure? And is there anything we can do to make his stay more comfortable? We have already spoken to Child Life Services."

I guess when your child is a regular at Boston Children's Hospital, they get to know you.

It appears that Nicholas has become somewhat of a hospital rock star, receiving preferential status and accommodation.

I know I should be pleased by all of this...but so far, all I am is nervous.


  

Saturday, October 15, 2016

Crash Dummy Parenting

Parenting a child diagnosed with complex medical needs
feels a lot like being a crash test dummy.


You're driving along, driving along, driving along.....


When suddenly....

WHAM

You hit the wall doing 90 miles per hour.


Despite a head-on collision
Strangely enough, you remain intact


There are no bruises, no blood, no broken bones

How can that be you ask?

Certainly after experiencing something like this...


There should be nothing left.
Right?
But again and again and again
somehow you manage to survive.


And so, with that said,
While I am happy to report that Nicholas is thriving at his new school,
We have uncovered a potential cause of his chronic urticaria.


What is urticaria you ask?
It is nothing more than a fancy name for a rash of unknown origin.
Nicholas has been suffering from it for over a year.

We visited with his current neurologist, endocrinologist and gastroenterologist,
added visits with a dermatologist, allergist and even a new psychiatrist.
We survived 3 hospital stays,
where his lips and ears swelled uncontrollably,
withstood another overnight EEG
and were evaluated by countless numbers
of white-coat Harvard Med School grads,
who scratched their heads and shrugged their shoulders,
wondering what on earth to tell us.
I swear I have earned my place as an honorary professor
of these droves of fledgling physicians.

Until eventually, we discovered on our own,
that Nick was suffering from chronic constipation.
Enemas and high doses of Dulcolax flushed him out
and improved the severity of his hives.

His gastro doc believes that Nick's colon is not working efficiently,
probably a result of his low muscle tone.
They call this condition a colon "motility" issue.

And so dear friends,
my brave young man will be spending Halloween evening
(his most favorite time of year) btw
and the next few days
admitted to Children's Hospital

WHAM


Where he will need to fast for 24 hours.
Keep in mind his food-seeking diagnosis...!
He will have a catheter placed in his colon to measure his gut contractions.
This will determine if an area of the colon is not working properly,
or if it is, in fact, his entire colon that is disrupted.

Currently, there is no cure for this disorder.

If the results of the test confirm a lazy colon,
we may need to consider surgery
to remove the area of his colon that is not operational
or consider
what's called an appendicostomy,
an operation performed by only a few physicians in the country.

It is a surgical procedure that attaches the appendix to the belly button
and forms a kind of access port for performing a less invasive, more effective enema.

WHAM AGAIN


If any of you have seen the movie:
Miracles from Heaven starring Jennifer Garner
you will recognize one of these physicians
and the Gut Motility Clinic at Children's Hospital in Boston.


And so dear friends,
I am reserving my energy
trying to find within myself
that peaceful place
so I may support my brave son
to overcome together
yet another difficult hardship.



Wednesday, October 12, 2016

Presidential DebHATE











From within the disgruntled masses came an outspoken man.

In the name of the moral majority,

he persuaded a passive public,

to target specific groups and individuals.

He blamed them for the state of the nation

and labeled them as undesirable.

Using fiery, unrestrained speech,

he spewed hatred and vindictiveness,

convincing an apathetic people to build walls and erect camps,

that lead to the execution of millions of innocent men, women and children,

and plunged the world into a war of epic proportion.

How was he able to do this you ask?

Because the public, the party, the country allowed it.

There was no outrage, no voice of reason.
.
No one covering their ears, and screaming for it to stop.

I am an American.

Raised by the belief that our founding forefathers designed the Constitution of the United States

to protect its citizens from those who would have you believe

that NOT all men and women are created equal.

I am covering my ears and screaming at the top of my lungs

ENOUGH

I am pleading with the public, the party, the country,

STOP HIM PLEASE

Take back our precious humanity, our tolerance, our ability as human beings

to renounce hatred,

to revere, once again,

all that is gracious,

all that is civil

all that is precious within us and inspires us as a nation.