Aware

Tonight we went to Family Night at Oliver's preschool.  They had a pizza party and spoke about the importance of reading to children.  A local librarian read a few books and sang some songs.  Oliver was incredibly fidgety and was unable to sit still for 20 minutes.  I know that he is only 2 and most 2 year olds can't sit still for that long, but he used to be able to do this.  He had an unbelievable attention span.  We have noticed the changes - a bit more manic at times, less focused, putting things in his mouth.  But tonight as I watched him get in and out of his chair and pay hardly any attention to the story and songs, I was taken back in time.  I remember when Waverly was about Oliver's age and I tried taking her to "story time" at the library.  She just acted differently from all of the other children.  I saw Waverly in Oliver.  And to be totally honest, it terrified me.  I was blissfully unaware of Sanfilippo when Waverly was this age.  Now I am aware of every change, every loss of skill or behavior difference.  I hate watching my sweet little boy begin to fade away.  We are still early in his regression, but the subtle glimpses of what is to come is unbearable.

There are pluses and minuses to his early diagnosis.  We have been able to be quite aggressive with therapy and early intervention.  We are seeing all of the specialists to catch any health issues early.  However, we are hyper aware of the changes this disease will cause.

My poor sweet little boy.