I have good news to report to all of Ben's fans! It looks like Lamictal is finally working a little for him. Both the frequency and the severity of his seizures has been reduced. It is amazing. He can go 5-6 days without a really bad seizure. I hardly dare to hope that this will continue for him.
The other day I figured out that my anger level - which is 95 out of 100, by the way - is too high for me to enjoy my life. I need my anger. It gives me the energy to fight neurologists who tell me that all I can hope for is some seizure reduction, not total seizure freedom. It keeps me going when doctors immeditately mention the potential need for a feeding tube because Ben has been having difficulty eating solids. I do not accept either of those options.
But it is too high. A 75 out of 100 would be enough to fight for him. And would give me a chance to enjoy my life again. It occurred to me that in holding on to all that anger, I miss out on the good parts of our days.
Ben aaaaalmost getting himself up on all fours alone!!! Chloe giving me kisses all over my face, saying "Mommy, I love you, even when you give me a timeout, or when you say I can't have chocolate". Ben learning to play peek-a-boo and giggling and laughing when he's able to pull the towel off his face. Chloe putting her arm around Ben and cuddling him when he's upset, whispering in his ear "ssshhh, it's ok, Ben", and Ben responding to her.
Ben is progressing and that's joyful!!
2 comments:
Catherine, so glad the new drug is working. Hopefully, it continues to work since the last post and ben is starting to eat again. Strength and Love, and a little less anger (75%). Love, Tamlin
You are an inspiration, Catherine, and I am so proud of you as a mother and daughter!! Benjamin is blessed to have your love. Mom
Post a Comment