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.




Friday, December 21, 2012

Another Journey to Children's

As family caretakers of a medically complex child, we find ourselves traveling to Boston Children's Hospital.... a lot.

Yesterday, we visited once again, our third trip in just 2 months. Since we did not know what time we would be back from the visit, we decided to keep Weston out of school and bring him along.

Depending on the traffic, and time of day it usually takes us 1-2 hours to make our journey into the city. It is a stressful drive through the congested streets of downtown Boston.

These visits to Children's have become like a frequent family adventure of sorts. Our routine is always the same. Pete drives. I close my eyes and hold on to the dashboard. The boys sit in the back. Nicholas falls asleep. Weston listens to his ipod. We park on the top floor of the hospital parking garage. We take the elevator to the ground level. We walk into the hospital where Pete gets his parking ticket validated and the boys and I journey into Au Bon Pain to wait for Dad. We have a lite lunch before our afternoon appointment. We eat the same thing and usually sit in the same table...pretty pathetic, I know.

Today's visit was to a new dentist. Nick's usual dentist, Dr. Lindi, suggested he have a tooth pulled to prevent the need for braces. Since Nicholas is considered "complex", he will once again need to be sedated for this procedure under the careful eye of the physician's at Children's.

We met with the young Dr Yi. He was kind and animated, two personality traits that work wonders in calming my anxious child. He gave Nicholas a pair of green sun glasses. Nicholas put them on immediately as Dr Yi moved Nick's chair backwards. This simple action of moving the chair back can sometimes send Nicholas into an anxiety meltdown, but today the sun glasses have done the trick to distract him and he stays happy and calm.

After a thorough, but quick cleaning and evaluation, Dr Yi explained that we will need to see the hospital's orthodontist to determine which tooth needs pulling.

I gasped and froze, thinking about the possibility of adding another trip to Boston to see yet another specialist.

Dr Yi must have noticed my panicked  expression. He quickly explained that the orthodontist could squeeze us in today.

"You do not have to come back to Boston for another appointment, he can see you at 1:30 pm."

"Phew," I said and thanked him for being so considerate of our time.

I thanked the Lord that we decided to bring Weston with us this trip so we could stay for this second appointment.

We had about an hour of time to kill, so it was back downstairs to the cafeteria with Nick still wearing his green sunglasses. We spent another small fortune on food.

Next, it was back upstairs to see Dr Akerman. He was a loud and jolly man and Nicholas was calmed by his presence. He explained to me that when removing teeth, fewer is always better. But upon looking in Nick's mouth, he noticed that one of his molars was at risk for becoming impacted. He explained that the oral surgeon would take a look during the removal procedure and determine if this tooth also needed to come out.

He said that the dental staff would call us next week to schedule Nick's procedure. Right now there is about a 2 month wait time.

We thanked Dr Akerman for his evaluation.

We gathered our books, backpacks, ipods and drinks and made our way back to the parking lot where we spent yet another small fortune in parking fees.

The ride home would be a long one, with lots of holiday shoppers clogging the many streets of Boston.

My mind was buzzing thinking about our newly revised to-do list:
An overnight EEG in January
A tooth removal procedure in February
A visit in January with Endocrinology
and a visit on Monday, Christmas Eve with our orthopedist, Dr Zimbler.

"Wouldn't it be nice, if it was Disneyland that we visited so much, instead of Children's Hospital?" I asked Pete as he swerved to miss hitting a cab.

"Nah," he said, "for some reason, I don't think we would have as much fun."

"You're probably right," I answered, grabbing the dashboard as Pete merged onto Storrow Drive to begin our long journey home.

In the back seat, Nicholas was already asleep...and still wearing the green sunglasses.