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.




Saturday, January 7, 2012

A Haircut for the Hospital Stay

Dad took Nicholas out today to get his hair cut for his upcoming stay at Children's Hospital on Friday.  I think he looks incredibly handsome!

He will be having another overnight EEG to determine the status of his night time seizure activity. Nicholas suffers from ESES, Electrical Status Epilepticus of Sleep Syndrome. It is a rare form of epilepsy. Click here to read a previous post about this condition.  Since he received poor results from his Neuropsych testing, we are assuming that his seizures have increased. This test will give us a better understanding of what is happening inside Nicholas's brain.

If his seizures are increasing, we will try to manage them better by increasing his Lamictal dose, or by trying a new medication, if necessary. The EEG will also tell us where in the brain his seizures are originating (left, right, temporal or occipital). Once we determine the location of origin of the seizures, it becomes more clear why we may be seeing regression. Different areas of the brain, control different functions of the body.

We have seen some regression in his speech, fine motor and cognitive abilities. It will be interesting to note, if this regression correlates to the origin of the seizures.

In true Nicholas fashion, he is very excited about his upcoming stay at Children's. I on the other hand, am not. Since it is the Neurology floor, there can be many young patients with severe brain injuries. My heart longs to help the parents of these suffering children. There are many images I have in my mind from previous visits that I will never forget. It is a deeply emotional experience.

Nicholas is not particularly fond of attaching all the leads and wires to his head. But we have discovered from previous visits, that if we cut his hair super short, the EEG technicians can use a tape instead of a smelly glue. Use of the glue requires the technician to blow air from a tube onto Nicholas's head. The smell of the glue, the noise and the cold air blown from the tube, is all very upsetting to the highly sensory-sensitive Nicholas.

"Oh no Mummy, not the air!" he will wail uncontrollably.

But by using the tape instead of the glue, we avoid this stressful situation and Nick is able to wait more patiently as they attach all the leads to his tiny head. The entire procedure takes about an hour.

His favorite part of his experience, is of course, the tiny black backpack he gets to wear all night! He has asked me if the staff will let him take one home this time.

Nicholas loves everything about the hospital experience. He loves meeting so many new people. He loves the cafeteria food delivered to him on a tray. He loves watching movies on his own television set. But most of all, I think he enjoys just spending the time alone with Mummy.

The EEG technicians have nicknamed Nicholas, "the mayor" since he loves to chitchat with all of the folks on the Neurology floor. Click here to read a previous post of our experience.

I will keep you all informed of our progress.