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, February 1, 2013

Off to Children's Again

It is February 1 and Nicholas and I are ready for another journey to Children's Hospital for his yearly EEG.


We have all recovered from the suds.

Nick's hair is cut short.

And I am feeling happy, calm and ready for our next adventure together.

Nick's new buzz cut is a very important step we take before his EEG.

Typically, leads are attached to his head using a very thick, smelly glue. The technician must use a blast of air through a small tube to harden this glue. The sensory sensitive Nicholas hates the loud sound of the cold air.

So, in order to avoid using this thick glue, we cut his hair down to the wood which enables the technicians to use tape instead of the smelly, noisy glue procedure on his head. It only took us two years to figure this one out. The short hair is also helpful when we remove the leads and glue from his hair the following day.

We are bringing along two of Nick's backpacks filled with a cornucopia of calming tools and "things to do". He has packed Spike the dog, his dreamlite and his favorite Dora pillow. Of course one of the most important calming tools is Weston, who is always the only one able to calm his distressed little brother when things get ugly.


I am hoping that this overnight EEG will provide us with some insight into Nick's current sleeping issues. Lately, he wakes often throughout the night and is not getting enough restful sleep. We will be speaking with our Neurologist about possibly starting a trial of Provigil, a medication recommended by Dr Jennifer Miller, a leading PWS Endocrinologist who has had much success treating her patients with this narcolepsy medication. In patients with PWS it seems to relieve daytime sleepiness and improve concentration with very few side effects noted.

I am bringing my camera and will try to give you all, my dear readers, a recap of our latest adventure. I am sure we will have a story or two to tell you when we return.

Adios Amigos!