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.

Thursday, November 1, 2012


After our adventuresome trek to Children's during Hurricane Sandy, the next day, Nicholas was still not feeling better.

I contacted Dr B (our Primary) immediately.

She switched Nicholas's antibiotic back to Augmentin and suggested I contact Nick's ENT. Like the ER doctor, she believes Nicholas may have a branchial cyst. She explained that the ENT will most likely perform some imaging tests.

I called Dr N"s office and was relieved to discover that he had an opening yesterday at 3:15.

With Nicholas at home, cranky and sick, my thoughts wandered off to fearful visions of a potentially dangerous surgery for my youngest child.

It was one of the longest days of my life.

I did my best to maintain a happy disposition while interacting with Nicholas; but my thoughts were  anything but happy.

"Push it out of your mind," I instructed myself, "It does not make sense for you to worry about anything until you meet with Dr. Nuss."

Throughout the day, I checked my watch...9am, 10 am, 11 am...when is it going to be time? I asked my impatient self, minutes passed like hours and I felt myself loosing my usual calm reserve.

Finally, it was time to go. As I drove the two of us toward Children's Hospital, I thought of my father who passed away suddenly just after Weston's birth. My father was the one person in my life who was always there when I needed him. Ironically, he spent the last day of his life helping me take Weston to a doctor's appointment. In my mind, I pictured my father sitting beside me in the passenger seat of our vehicle.

"Slow down," he said to me in my thoughts "It's important that we get there in one piece, you knucklehead."

The familiar scene of my father cautioning me on the dangers of speeding, comforted me and I drove to our appointment slower and with a much calmer spirit.

"You're in luck," the receptionist said as we arrived for our appointment, "Dr Nuss is uncharacteristically running ahead of schedule."

Phew, I thought to myself and thanked the powers-that-be or perhaps my Dad once again, for any heavenly intervention that was provided to us.

We were quickly guided to an office where Dr Nuss promptly came to exam Nicholas.

Dr. Nuss is another amazing member of our medical team. He was the surgeon who performed Nicholas's tonsillectomy.

After a thorough evaluation, Dr. Nuss provided me with his thoughts.

He believes Nicholas has either a branchial cervical cyst or a malformation of the lymph node (lymphangioma). He does not believe the lump is cancerous since it did not feel hardened to the touch. He would like Nicholas to undergo an MRI so he can get a better look. The MRI will need to be performed in Boston since Nicholas will need to be sedated.

A branchial cervical cyst is a congenital growth that occurs during embryonic development.  A cyst forms inside the lymph node and can swell or become infected during a respiratory illness. They can be removed surgically but it is a delicate operation since there are important nerves, airways and blood vessels in that area of the throat. Dr Nuss explained that this is a more common occurrence to children who are diagnosed with diseases caused by chromosomal abnormalities.

Depending upon the location and size of the cyst, another removal option is to have an interventional radiologist inject radiation via a needle to destroy any cyst tissue. This too will require a surgical setting.

A malformation of the lymph node or lymphangioma is also a congenital condition that causes the lymph node to develop improperly. This can also create a growth that occurs when there is an inability of the lymph node to drain properly during infection. Once again, depending upon the size and location of the malformation, our options would be either surgical removal or needle radiology.

Dr. Nuss sent a request to Children's Boston for an MRI and told me they would contact me soon to schedule the procedure. Once he received the results, he would contact me.

I drove home from our appointment feeling frightened and numb. My fearful swirling thoughts were interrupted, however, by a sound slowly rising from the backseat.

"What's gonna work.....teamwork! What's gonna work....teamwork.!" Nicholas's quiet voice was singing his favorite Dora song. He was happy and completely unaffected by the unwelcome news of today.

Tears stream down my face as my emotions are conflicted. I feel the brutal stabbing pain of knowing this sweet child will need to undergo a difficult surgery. And yet, I feel an overwhelming sense of importance to be raising such a kind and loving spirit.

It is indeed a bitter sweet life.