Weekend Update:  Running on Empty

With each passing day through the weekend Jackie’s spasms continued to decrease, but returned during the nights.  In fact whenever he tried to sleep it was unsuccessful.  Subsequently Jackie’s over tiredness is now starting to impact everything else from eating to speaking.  We plan to work with Dr. K and his team to find a solution so Jackie doesn’t continue to regress.

There were definitely positives over the weekend. Both days Jackie had friends come to visit him.  Even though he did not talk much, we could tell he truly enjoyed every minute spent with them!

The only therapy Jackie had this weekend was Recreational Therapy.  We are glad to be back working with Jenna.  On Saturday Jackie went up to the fifth floor gym and played the giant pinball machine.  He had played this before and it was fun to try it again.  Sunday was a Wii day.  Jackie used the huge TV in the fourth floor gym and decided to play Wii bowling.  He had some problems releasing the one button when we played before, but he did very well this time.  A good sign of motor skill improvement! PTL

Jackie is running on empty when it comes to sleep.  We are hoping he has less spasms at night which will enable him to sleep more.  I hope you are having a good start to your week and that you were able to recharge over the weekend.  Even a good nights sleep should not be taken for granted.

“A happy life consists not in the absence, but in the mastery of hardships.”
~Helen Keller