"...fear less, hope more..."

tonight i just feel out of sorts

perhaps a reminder that i so desperately desire/need Mondays to be "normal"

D neurology appointment was scheduled for 10:30a
but it was at least 11:20a before she saw us
patience had stretched very T.H.I.N for both Lance and i

the appointment was fine
there was good dialogue
had to re-tell the facts of 3 seizures in 12 hours
--one of them lasting 11 minutes--
after being seizure-free for 6 months
discouraging to think about it again

then i had my list of questions ready

1. AEA - should he be re-evaluated?
D had recently been graduated from the bi-weekly in-home therapy
but should he be evaluated now again?
since his Keppra dosage has been increased?
and to assess any residual effects of the recent seizures?
neurologist agreed he should be re-evaluated

2. MRI - is it time for another?
he had 1 MRI, at the age of 1 - it showed nothing abnormal
but that was 2 years ago
i continue to wonder if there is something structurally contributing to his disorder?
perhaps his head was so small then that it was difficult to see any abnormality
but they would have to put him to sleep in order to do the MRI
which in this modern age we often forget is inherently risky
but i continue to want a logical explanation for the seizure disorder
neurology is so complex and from my perspective defies logic
she mentions that if there was a brain tumor, he would be much worse
really?!
my friend's son had a brain tumor with subtle symptoms for several years
what if all this medication is masking something bigger?
i can see i have the neurologist thinking
we decide to wait and see how he does with this new higher dose
and how long a duration until the next episode
question answered

3. MEDS - anything we can do about this aggression period with increased dose?
she mentions some Keppra patients have reported that vitamin B6 helps
it's clear she's uncertain if it really does or not
but it can't hurt to try
so, we'll get some B6 purchased
and begin with a 100mg tablet 1x/day - crushed
so for breakfast daily he'll have
synthroid, keppra, vitamin b6, and a multi-vitamin
and CHOCOLATE MILK :)

daily i'm thankful for the internet for many reasons
but today especially i benefited from reading many mom posts
about their children with seizures
about keppra
about B6
and i'm affirmed in this recommendation to add the B6

then it was off to the blood draw
D is SO STRONG!
4 adults needed
i'm laying across his body - my head is turned away
so i can't see the needle, the blood, or the big alligator tears
lance is holding head and shoulders
D is SCREAMING!!!
but we have an awesome 20-year experienced blood drawing tech
she got the right arm vein 1st try! AWESOME!
1 vial of blood drawn
starting to fill the 2nd
D begins to fight
he flexes so tightly that the vein literally pops the needle out
we only have 2 vials of blood, we need 4
right arm is now unusable
he's inconsolable
i know the drill
hold him, try to settle him down
before we go for the left arm
i'm personally holding back a FLOOD of tears
lance lays across him
i sit on my knees on the floor and just rub his feet/legs
fortunately she is able to get the left arm vein with only 1 stick
CELEBRATE THE SMALL THINGS!
vials 3 and 4 filled
DONE!
except now he his ANGRY about the yellow smiley face stretchy tape around each elbow
all parents are inherently trained in the power of distraction
get his sweatshirt on - so yellow smilies are out of sight and hopefully out of mind
and get this boy some Scooby Doo stickers! as many as he wants :)

EXHAUSTED
physically
emotionally
EXHAUSTED

good/bad news is we shouldn't need to do this again until July 27

we stopped at Jersey Freeze on the way home
i fed D a dish of vanilla ice cream - and licked his spoon just a couple times :)
their ice cream is THE BEST!
but it's not part of my "final countdown"

i worked from home this afternoon while D napped
i was admittedly in a funk
just needed some time alone...

it is SO HARD to see your kids hurt
physically and/or emotionally
and unable to do anything about it

i couldn't help but reflect on God the Father and Jesus the Son
and how we remember in this Holy Week
the Father knowingly allowed his Son to go to the cross
to be completely forsaken
to be painfully crucified
so He could defeat death
through the resurrection
to offer all us access to ETERNAL LIFE!
that's grace
a remarkable undeserved gift

when my mind races
it's best to keep my hands busy
so tonight i made dragonflies
color, creativity, bending, shaping, transforming, sharing
HOPE . PATIENCE . STRENGTH . VICTORY
i needed an injection of all of that

so often i want things to be different than they are
impulsively i want to jump back into my deep pit of control
but i choose not to

“I can't change the direction of the wind, but I can adjust my sails...” –Jimmy Dean quotes

"Attitude is a little thing that makes a big difference." -Winston Churchill

"...though no one can go back and make a brand new start - anyone can start right now and make a brand new ending..."

"Your present circumstances don't determine where you can go; they merely determine where you start." -Nido Qubein

"When everything seems to be going against you, remember that the airplane takes off against the wind, not with it.” – Henry Ford

"A bend in the road is not the end of the road... unless you fail to make the turn."

"Fear less, hope more;
eat less, chew more;
whine less, breathe more;
talk less, say more;
love more, and all good things will be yours."
-Swedish proverb