Our Journey Raising Two Children with Special Needs

This blog chronicles our life raising two children, Nicholas 14, diagnosed with Prader-Willi Syndrome and Weston 17, 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.

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....


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.
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


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.


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.