Saturday, June 27, 2009

A new day (start Clobazam)

I want to thank everyone for the words of encouragement in response to yesterday's post. I was extremely upset (crushed really) when I wrote that post. I have not yet replied to the email, which is probably a good thing, I need time to think how I might carefully approach the subject matter. I don't want to sound like a raving lunatic, but Mike and I both know what we heard and we're just wondering how both of us could have gotten it so wrong. So yesterday was a bad day, no doubt about it, but today has been much improved. Reagan slept fairly well last night. She must have been exhausted from the lack of naps and nonstop crying all day. She finally fell asleep on my mom around 8pm, and she was still out cold when I took her and then attempted to feed her medicine. She was OUT. She choked on the food/medicine a few times but I eventually got it all down. She never woke up. I laid her down and she slept til 1 or so. 5 hrs, that's pretty good for her. It's nice to see her sleeping that soundly. She rarely ever gets to that point anymore, where she's just out cold, sleeping soundly. Sleeping like a baby. She had a few whiny moments this morning, but it was nothing compared to yesterday. The Clobazam finally came in. Apparently they tried to deliver it yesterday while we were at therapy (I found a note on the door). I wanted to go get it right away, but the postal service was holding it hostage and wouldn't allow us to pick it up until this morning. I gave her the first dose tonight. We're starting out at 1/4 tablet 2X day (2.5mg 2x/day). I want this so badly to be the one. Please keep it in your prayers that this will help decrease her seizures without any of the nasty side effects of it's cousin Klonopin. We had a great sermon at church tonight. I was particularly touched by the last scripture that was shared...Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the LORD your God is with you wherever you go.” –Joshua 1:9 (ESV)
Words to live by. How can you feel weak and discouraged when He is with you? Makes sense, although sometimes it's easier said than done.


Heather said...

We pray right along with you that this is the ONE!!Glad the day was better.Sorry we didn't connect ... heavy day to say the least.

Anonymous said...

Be not afraid, for I am your God. Be not dismayed for I am with you. I will strengthen you and help you. I will uphold you with my righteous right hand.

Isaiah 41:10

Sophie's Story by Elaine said...

It's hard not to be crushed ESPECIALLY when it comes directly from the person that gave you hope. I definitely think you need to follow up with him. You and your family went through a lot to make that visit and the testing that was said to be done when you left should be done. Maybe a phone call would be better than an e-mail...more personal.

I hope you see relief with Clobazam. Besides ACTH, it was the only med that had any positive effect on Sophie's seizures.