Friday, May 11, 2012

this MIGHT be that post...

I had started this post and it was originally title Vicious Circles, but as my day ran on and into itself and then back out again-- the changes thru the day and when I finally got to finish this post it was a totally different emotion... please bear with me...


Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. Matthew 6:34
I am working hard at trying to live this verse...
Our weeks are seeming to get worse and worse by the day! It all started with the last ‘running away’ issue and from there it has grown into:
~ quite a few trips to Winnipeg to see the epileptologist and psychologist
~ many phone calls to find someone closer to home for psych help
~ new meds
~ new reactions to meds
~ extreme tiredness (on everyones part)
~uncoordinated, clumsy walking, no hand eye coordination, mumbling, 
 emotional out bursts, anxiety, lots of incoherent speech, rambling, falling asleep at the drop of a hat, quarrelsome attitude, aggressive times
This is since he started on the Clobazam last week. He has been on his maximum dose of it since Tuesday (today is Friday) and the side effects are at thier highest they have ever been -- but they started once he started the med. We will wait until next week and see if it subsides.
Next Tuesday, we start reducing the Keppra at 1 pill a day and we are praying that once that starts that Sam can see some improvements.

Yesterday he had a major meltdown with Dennis and I over everything that is happening. He told us how he puts on a good show for everyone at school, his friends are not so much anymore, he hates school because of this and then he started to get up to leave... he told us how he wished he "had never gotten shot in the frickin' head in the first place" ....

Over the last 4 years he has never said anything about his accident or the epilepsy that was remotely negative. He basically handled it with a "well this is it and I cant change it -- so I guess I will live with it" attitude. Both Dennis and I were shocked to hear him say this. He proceeded to tell us that he wants to stop all meds and live with the seizures instead. He is tired of feeling drugged out and 'out of it' all the time. 


It broke our hearts to hear him vocalize such heart wrenching confessions and know that for his health we need to at least give the doctors a chance to help him (now that someone finally is). 
So here was our deal with him: on Tuesday he was to start reducing the Keppra by 1 pill a day, so we agreed to let him start last night with a 1/2 pill less than usual and stay at that until Tuesday, and he agreed to give it a go...


THEN ....


This morning as I started to type this post, we got a call from the epileptologists' nurse and she had spoke to the Dr. and he said to start decreasing him tonight 1 FULL PILL! And to continue doing so at  5 day intervals until he is off the Keppra!

 HALLELUJAH!!
Our day went from cloudy to sunshine...

We know it is not the end or end of anything but it is a start. 

A start where we can maybe begin to start seeing our old Sammi again. 

WE miss that SAm, HE misses that Sam....

All that we have been going thru we know there is a reason and like the song that has been going thru my head today by Randy "In God's Time" :

In God's time
A million years might only be a single day
And everything He does gets done His own way
In God's time

And in God's time
You'll find that certain someone you've been praying for
And they'll be everything you dreamed of and a little more
In God's time

Oh, but no one knows
Not you or me
It might be tomorrow or it might never be
Oh, but don't lose faith
Put it in His hands
'Cause it might be that He might have a bigger plan
Than you had in mind
Miracles happen
In God's time

And in God's time
You'll finally get the chance to hold your baby girl
And all the sudden everything'll make sense in this crazy world
In God's time

Oh, but no one knows
Not you or me
It might be tomorrow or it might never be
Oh, but don't lose faith
Put it in His hands
'Cause it might be that He might have a bigger plan
Than you had in mind
Miracles happen
In God's time

And In God's time
You go to sleep and wake up with wings and learn to fly
And you finally meet your loved ones on the other side
In God's time
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1 comment:

caregiver said...

That would be great. Here is my heartfelt prayer and wish that it works. Keep us posted. Many with seizures on this drug also. I would like to see Bill lowered from his 4000 a day of this med. Thanks Jodi and good luck to Sam. gin