Heal Nick

Last week I reported on how encouraged Nicholas’ neurologist is at seeing the small improvements since his surgery. This made us become more aware of subtle changes. The two most notable this week were overall awareness of his surroundings, especially when he’s walking. He is very cognizant of obstacles that might impede progress. This translates into Nicholas being more safe to himself. Consequently, when he’s now getting around with the walker, he does it independently. There is always someone next to him but no longer holding or having to support him. The other thing we’ve noticed is his use of more sophisticated sentences and vocabulary. Go Nick!

Nicholas had a 2 month post-op evaluation this week by his neurologist, who was very encouraged. He reminded us that we are not always aware of the progress Nicholas is making, as we’re with him everyday. Any changes we see are seemingly subtle and, perhaps, insignificant to the untrained eye. However, the changes the neurologist sees are “significant”. Nicholas was able to perform various dexterity & cognitive tests he could not do pre-op, which in themselves are positive indicators. He did remind us that we are only into a little over 2 ½ years of a very long process and overall Nicholas is improving.

It was great to get away to the Scottish Highlands last week and, as always, great to be home to catch-up on Nicholas’ week. Reported as not a bad one at all. It started with a night at the Rhumb Line with “Silky Smooth” joining old friends for music, lead by Shane. Just what the doctor ordered. A break from the routine and catching the positive mind sparks from friends he doesn’t see too much of these days. Unfortunately, there were a few mid-week glitches, a short seizure and a minor eye infection. The eye has healed. We tend to accept minor seizures as a certain indication of his brain being overly active in the recovery process with the end result of Nicholas being more alert and aware. The week ended with a delightful summer day, taking in the sea air and sun and just relaxing, as evident in the new pictures just posted in the Photo Gallery.

In order not to overlook any opportunity in the recovery process and feeling that Nicholas might just have progressed to a stage where speech therapy might be of some value, we arranged for 2 hour evaluation interview last week with the conclusion that he will pursue a therapy program for the next several months, starting mid-July. Until then we have been instructed to get Nicholas much more involved in repeatable, routine, daily tasks, as this should eventually promote initiative. We were also told to cease doing so much for him. Let him do his own problem solving.

Taking this to heart and with the caregiver off for the day, for the first time in quite some time we spent the entire day today with him. It was inspiring. With almost no instruction Nicholas was able to sort out all kinds of daily tasks. He was very deliberate, perceptive and constantly aware of his personal safety, especially when standing and walking.

Every so often in this long process, we have day of pure satisfaction and realize how gratifying it is to have dedicated ourselves to Nicholas’ recovery. He works harder at this than we do and all of us, Nicholas included, were smiling at the end of the day. There is a lesson here for everybody.

I will be away for a week starting next Friday and will not be posting on Sunday, July 15th. The next posting will be on July 22nd.