My Experience

An up and down day.

Today was a rough one.  Nick was sick.  It might turn out that he just has a cold, but that is the problem, we never know.

He kept sneezing.  I think that if I was watching our day today on a TV show, I might even think it was funny.  It could be considered slap-stick humor.  Nicks responses to stimuli are often delayed, both his language and his body control.

When he sneezes, it seems that he knows something weird is happening to him and he turns his head toward the person closest to him.  Then this odd look come over his face, that I have come to recognize as his “I am going to sneeze look.”  I grab a towel that we have close by and cover the offending snot weapon.  However others are often caught unawares, and they are covered with it.  Then Nick will laugh, he thinks that it is very funny.

His siblings believe that he does this on purpose.  I don’t believe that the sneezing is on purpose because of the look on his face just before the event.  But he certainly does think it is funny afterwards.

Today it was more than just sneezing however.  He was struggling to breathe when he was sleeping.  He was very tired and slept most of the day which is unusual. We kept his APAP (Automatic Positive Airway Pressure) machine going during the day too.   Arden stayed home with him while I went to church for a couple of hours to fulfill my assignments there.  I was very concerned about leaving Arden alone to care for Nick and kept texting him, asking if Nick was ok.  We both were very worried.

You have to understand that we are always concerned that he will start the cluster seizures, especially whenever something in his environment is out of balance.  We have been told by various specialists that one of these days the rescue medicines won’t be effective and we won’t be able to stop the seizures.

Having this fear of Nick passing away hanging over our heads is very stressful on our family.  I was trying to explain this to someone today who told me that I was very blunt about the possibility of Nick’s passing.  I don’t think they understood how serious it is.

Nick has Lennox Gastaut Syndrome which is a difficult to treat, severe form of epilepsy.

Epilepsy itself is a progressive disease.  The more seizures one has, the higher the chance of having more seizures.  The brain develops the habit of seizing.  This is why individuals with epilepsy try to do everything possible to avoid having seizures.

By late afternoon, Nick had improved some and both Arden and I feel that the potential crisis had passed.  Yet again, we never know for sure.

This evening we had a wonderful time working on a puzzle and listening to music.  It almost seemed like the rest of the day was a bad dream.  I wonder what tomorrow will bring.

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