Our little Benji had a birthday!
We love this guy so much!
He is such a sweet spirit in our home (most of the time:)
A quick update on how he's doing...
Things have taken a turn for the better the last couple of months.
It used to be that his norm was a cluster and Diastat to stop the cluster about once a week. Then it would take him several days to recover and be himself again...usually just in time for another cluster.
We were having some bad nights where he would be awake for hours and be constantly, repetitively talking/questioning me and so I didn't get much sleep either.
However, even though he is having random, sporadic seizures still (that he recovers from quite quickly), he hasn't had a cluster or Diastat for just shy of 2 months (I am posting this mid July...his birthday is the beginning of June). Not only that, but when he does have a seizure at night, he goes right back to sleep with no problem.
It really has been quite miraculous! We haven't changed any meds or anything...we figure it's just probably the syndrome doing it's thing...evolving. We have no idea how long this will last but we will take it!
We are so incredibly grateful and recognize the amazing blessing this is for our family.
I love when he tries to blow out candles!
He gets the cutest face...
We had kind of a quick little celebration since we were headed to my brother's wedding dinner that night...I'll post that next...
However, that next Sunday we celebrated both Ben's and Andy's birthdays at my parents' house.
Everyone wanted to help blow out the candles :)
Ben got a fancy, singing McQueen card...
"Bapa's" little buddies...
What a great post--and such great news!
ReplyDeleteI love those photos of him at the top with his brothers.
What a guy!