Day Four

Well we started Cully on ACTH on Tuesday. We were to understand that we would see non stop crying and mood swings. We were also told we should see a change in his seizures by day four..

 THEY WERE RIGHT !!!!!!

I reached my limit and the stress won. I had tears in my eyes and had mood swings that would have run the average woman out of the home..  But my wife stuck around...  And As for Cully?  Well the meltdowns do not seem much different than usual. I do not see the mood swings in him... Oh, and as for the seizures? We have had seizures every day..

UNTIL TODAY !  NOT A SINGLE SEIZURE TODAY..... DAY FOUR !

Maybe we really did find the trick.. I know from all the other things that this does not mean anything yet but it sure is a nice feeling to see a day come by without a single seizure. 

Cully is beginning to get "Pumped Up" Like a bodybuilder and not like a fruit or a pudgy ball like we thought. My boy is already huge for his age and with this drug he is starting to resemble the sort of kid you would not want to meet in a dark ally behind a Chucky Cheese.  His hugs are all the better each morning as he now runs into my room and throws himself on me and squeezes me with brute force... and it feels soooo good too.

Douglas continues to be our biggest helper. This boy comes home from school and is there at every second just waiting to help with Cully. Change a diaper, play football, just sit aside Cully and listen/talk with him. He really enjoys it too, not just something he feels he needs to do to get our approval. His connection to his little brother is like nothing I have ever seen. Doug is awesome in so many ways. SO a huge public "THANK YOU" Doug...