Wednesday, August 19, 2009

A break from seizures

Not much excitement today...just the way I like it. Last night Reagan slept well. I love that. She woke crying at somepoint this morning and we just put her in bed with us and she fell right back to sleep. Then we got up early and went to an early session of Feldenkrais/ABM. I won't pretend to know much about these methods, but essentially they're all about body/self awareness. Reagan doesn't know she has a hand or a leg, that's why she doesn't use them. Makes sense. Reagan was in a much better mood for today's session. She was talking up a storm again. I swore I heard a few mamas in there! I was priming one of the bathrooms today and she was in the other room with her musical toy and out of nowhere she said something that sounded like a complete sentence. It was weird...it didn't even sound like her! Maybe someday we can get some real talking out of her?!?! She's definitely trying. If only we could get control of these stinking seizures. We haven't seen any improvement seizurewise with the adjustment of her Clobazam dose (other than the very first day, but that must have been just a fluke). I guess I'll put in a call to her neurologist to ask him what next? Although my guess is probably as good as his. Seriously. Please keep all of this in your prayers. Reagan SO needs a break from these seizures.

5 comments:

Rhea said...

We are trying something called Truehope for Anna. It's vitamins, but more then normal. She is only on 3cc of valproic acid compared to 8cc. Hopefully soon she will be off all of it. The ped. doctor isn't overly happy, but we want to see what she is like without being on meds. Ken's boss suggested it to us. So far, so good. Maybe google it or call them.

Missy said...

I am glad that Reagan had a good night and an uneventful day. Like you, I love those days! It's awesome to hear that she's trying to talk. Your post made me think of the story of Albert Einstein that didn't speak until one day when he said, "The soup is hot." I can see Reagan in the other room trying out her sentences while you aren't around!

Praying for more good nights and seizure free days.

Missy

Heather said...

Wish I could hear her for myself.Pretty darn cute I would imagine.Hoping and praying to have seen some improvement with the increase.Disappointed,mostly for her.Days like today,where she is happy and talking up a storm,make me all the more certain that if these seizures could just go away,Reagan would take off.Love to you all.I'll try and call tomorrow to get an update on the house and check on things.

Anonymous said...

What is this therapy you are doing?

Hudson is the same way, no purposeful function of hands, fingers...doesn't know they are there!

Must be be wonderful to hear her sweet voice, and the sound of happiness coming from her, not tears!

Praying for her seizures always!

Debbie & Hudson
caringbridge.org/visit/hudson

Anonymous said...

Thanks for leaving me a msg at Hudson's site...

altho I wish this on no one, it is good to know we are shouldering this together, we are not alone. I wish you were one of those families who got their miracle,(and you may) but there is also comfort in knowing I am not the only one with these feeling and emotoions.

I too get down on my faith at times, especially when I feel like my plate is on overflow, the rim is brewing over and I can't take another seizure, vomiting, and just not knowing who my son really is. Doesn't God see I have had ENOUGH, Hudson has had ENOUGH???
No, it is not fair, not fair at all...but God knows the big picture and He knows us better than we know ourselves, and he gave us these precious babies because we were saw fit in His eyes.
I look at families with 3+ kids and always think to myself that those parents don't know how lucky they are to have healthy children, why couldn't I have 3 HEALTHY children? I would give anything for Hudson to be healthy...we keep fighting, trudging through the mud, and never stop praying, believing that one day our babies will know life without broken bodies...if it doesn't happen here, we will see it happen in the kingdom, and they will run and play as we have always envisioned!

Hugs~ Deb