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.




Wednesday, October 2, 2013

Poor Juggling Skills and Nick's Teeth

We see alot of specialists.

Neurologists, endocrinologists, gastroenterologists, orthopedist, ENT's......you get the drift.

Most of these fine physicians want to see us every four months. This would be fine if we had only one or two specialists to see, but since we see so many, our schedule can become just plain ridiculous.

I am the family juggler, the coordinator of all these specialist appointments.

It is a constant struggle for me to keep all of these balls suspended in the air. The delicate appointment rotation from one specialist to the next is difficult. I don't know if you have ever watched a juggler perform, but perhaps you have noticed that their eyes never leave the balls. They are hyper focused.

I am not.....and as a result my juggling skills are poor.


Unfortunately, it is my children who seem to pay for my ineptitude.

Let me explain.

In an effort to maintain a sense of normalcy, and to avoid being ruled by our busy schedule, this summer, I tried to schedule some down time for the family. We cleared our calendar and tried to focus on having some fun for a change.

It worked and we began to enjoy the slower pace.

With the arrival of fall however, our appointment pace resumed and with it, a trip to the dentist for Nicholas.

Children diagnosed with PWS have thick and decreased saliva production and as a result can suffer from an increase in cavities and poor dental health. Visits to the dentist are critical.

So, it was off to Dr. Lindi for a cleaning.

As usual, she was super effective at keeping Nicholas calm and engaged. The appointment went so well I assumed all was well with Nick's teeth.

"So how do they look?" I asked Dr Lindi, eager for some good news.

"Not good, I am afraid," she replied.

"He has eight cavities and we will most likely need to bring him into the hospital for all of this work. We'll also need to take some xrays to see between some of his teeth. There may be more."

I was speechless as I heard the very loud thud of one of my balls dropping loudly to the ground .



I cringed at the thought of another hospital visit and fasting surgery for Nicholas.

"Can we try to do it here?" I asked desperately.

"I just don't think he could tolerate it," she replied honestly.

"OK" I said reluctantly and asked when she thought she could fit him in.

Friday, October 4 was her reply.

So, we are off once again to the hospital with Nicholas. This time however, we are going to Franciscan Hospital in Boston instead of Children's.

I am hoping the change of routine will distract Nicholas since he remembers with much displeasure his latest tooth removal surgery.

He will have to fast, which as you know, is very difficult for a child diagnosed with an insatiable appetite. We made the appointment for after noon, so he can still wake up early and eat his breakfast.

Pete has taken the day off from work and you all know the drill......



Here we go again.

I can't help feel like my poor juggling skill and one dropped ball is responsible for putting poor Nicholas through another terrible ordeal.

 
I am sorry dear Nicholas