Home for the holidays

Owen remains seizure-free both in the physical manifestations of infantile spasms and in the brain wave patterns associated with these, according to our observations and the EEG that he had on Tuesday. We began the four week weaning off of ACTH on Wednesday - a reduction of 20% each week. We are very hopeful that the spasms will not return even though the possibility exists, most commonly during the weaning process. We appreciate each seizure-free day that we have with him.

As is the case each year during the four weeks leading up to Christmas, things are very busy at Grounds for Change and will continue to be that way until we close on December 21st. We are especially looking forward to our annual holiday closure this year. During this time, the week between Christmas and New Years, we get to catch up with a number of friends, enjoy the holidays with our local family and on the 30th, hold our first annual Gala Coffiesta at Grounds for Change.

Owen turned five months this last Thursday. His reflux has greatly improved and he is slowly gaining weight. He is wonderfully cuddly, nuzzling into our chest and faces when we hold him or lay on the floor with him. Coming off of the ACTH is not easy and he is very interested in being held much of the time. It is such a joy to be able to comfort him in this way.

We have put all doctors appointments, hospital visits and therapy sessions on hold during our vacation week. We'll be "home for the holidays" and enjoying every last minute of it.

Peace and love,

S/K/O