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.




Tuesday, January 8, 2013

Buttons, the Suds and Another Trip to Children's Hospital

Nicholas was diagnosed with ESES, a rare form of epilepsy. Because of this, once a year we must journey into Boston to perform an overnight EEG. This test measures the amount of sub clinical seizure activity occurring inside Nick's brain when he sleeps.

So, on Friday, it is off to Children's Hospital we go......once again, our 4th visit in two months.

I am not complaining. I know our situation could be much worse. I will be reminded of this fact as we pass through the hallways of the Neurology floor. It is a humbling experience. In fact, I think it should be required of all our local citizens, to spend one day a month visiting patients recovering on this floor.

Nicholas calls this EEG procedure......"getting his buttons put on."

"Buttons" is the terminology that the technicians use to describe the leads that are placed all over Nick's head. For some reason, he remembered this word and now uses it to describe this time consuming procedure. It is difficult to keep the sensory-sensitive Nicholas calm while glue, tape, wire and leads are applied to his head. Hard-core distraction techniques from Weston, hubby and I are always required. We have used every trick in our arsenal of redirection tools including playing videos, reading books and as a last resort......singing.


But despite all this, in true Nicholas spirit, he still looks forward to our adventure together. He has had this procedure performed so often, he believes everyone has had it done at some point in their lives. In fact, he asked me today if I liked getting my buttons put on when I was a girl.

To relieve Nick's anxiety, we establish a routine for his hospital visit. He looks forward to getting a sponge bath, ordering room service and visiting the "Krusty Krab" a small closet in the room that he pretends is SpongeBob's work place.

I sleep in the small cot (wooden plank) that is provided to parents who want to spend the night with their child.


In true Lisa spirit, I am not exactly looking forward to my stay. No matter how many times we perform this test, I will never get used to the sight of my son's head wrapped in wires and tape. It is an in-your-face reminder of Nicholas's medical complexity and fragility.


Every time we visit, my heart takes a beating.

This week however, Nicholas seems to be battling the suds.

What's the suds, you ask?

Well, according to my to children (and my equally amused husband), the suds is SpongeBob jargon for a cold. Yes, the three of them watch far too much SpongeBob.


Nicholas missed school on Monday and will be attending half days for the rest of the week in an effort to keep him healthy for this EEG on Friday

I am sure I will have some interesting stories to share with you all when we return.

If you feel up to it, please say a few prayers for some good results for Nicholas.