Sharing stories of fear, frustration, hope and acceptance

Archive for October, 2013


I MUST BRAG! Today was WONDERFUL!!! My Adam finally made it to the park! To the slide!! Last year we took him to the park and we put him on the swing- ventilator and all- we put him in the swing and pushed ever so delicately. That day,back then, I said we need to take him on the slide next. The nurse made Adam and I a deal (come back without the vent an the slide is all his.)

We waited a whole year an FINALLY Adam made it down the slide!
So happy with my boy. His progress is a daily gift. He smiles more, he moves his head more, he even TASTED some of the food I had. Mark these words “that boy WILL eat by mouth again.”
He wants it and I’m going to help him!
Next on the “short-term” goal-list:
Chuck E Cheese Pizza Place.





Weening Meds and Smiling More

This weekend my husband and I spent the night away from Adam (for a night to ourselves) for the first in a long time.

We are recently weening clobazam down and Adam is really doing great considering he is experiencing withdrawals. He has more tremors and he’s tighter than usual. We’ve decided to extend this weeks decrease from two weeks to three. The reason im including all these details is to hopefully help others with the withdrawal process of anticonvulsant pills.
I’ve learned that doctors are quick to hale benefits of RX but not express the difficulty to get off. YOU ARE ON YOUR OWN.
Regardless of all that Adam is showing improvement. He hasn’t had any seizures (so far) and everyday is exciting for us.
He is moving his head more, he is initiating his back muscles more, he SMILES MORE!
Recall…. there were days he
He even ATE applesauce today. He smacked his lips at the smell, opened his mouth for the spoon, allowed the food on his tongue and swallowed it!!!
We did this three times and let him rest.

I Just KNOW IT!! He will eat by mouth again!!! Adam also is continuing to do well breathing on his own.
It’s wonderful! I feel like finally the sick feeling of hopelessness and dispair, is at least starting to lift. My heart goes out to mothers in that place. To you I say DON’T GIVE UP! PLEASE FIND THE POSITIVE: not for you but your child.
Your child’s body may not be capable right now, but YOUR attitude can have more of an impact on your child than medicine.
You MUST have hope.
Hope and faith.
Find some one just a little farther on the same journey and look to them for inspiration.