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.




Sunday, March 10, 2013

Back to Children's...Again

In an effort to avoid the hardships associated with maintaining braces, Nicholas is scheduled to have some teeth pulled.

So, on Friday, we are headed back to Children's Hospital....once again.

This is our 5th visit in 5 months.

Thankfully, if all goes well, it is just day surgery and will not require an overnight stay.

For a variety of reasons, children diagnosed with PWS are susceptible to sleep-related breathing issues and can sometimes experience a repression of breathing during anesthesia or conscious sedation.

Nick's low muscle tone makes it difficult to gain IV access, veins tend to roll away as a needle is inserted into the arm, requiring several "sticking" attempts. This, by far, is his most dreaded procedure and an all-out scream-fest is assured.

As you know, Nicholas is always hungry. Mealtimes are anticipated with a heightened sense of awareness, so going eight hours without eating is an even more challenging issue for us.

Pete has taken the day off from work. He is an on-the-clock-employee so  he will not get paid for this time.

I am experiencing my usual pre-hospital visit jitters. This is the last of Nick's scheduled procedures and I am anxious to complete it and schedule some such needed down-time for our family.

Weston, who is Nick's right-hand-man during these types of events, is ready with his typical good spirit and positive attitude. He will accompany us as we follow our usual routine into the city.

And so as Dora the Explorer, one of Nick's favorites would say...

Vamonos...Let's go!