MRI results.....

i just got off the phone with connor's geneticist.

i called him (several times this week) and finally got ahold of him today.

i was calling for the results of the MRI.

he said he was just getting ready to sit down and look at the actual MRI, after reading the report.

i am confused more now than ever.

the MRI of course did not find anything specific that results in an immediate diagnosis.

but it did however, show some things that could possibly help point us in some direction?

what it did show was that the atrophy has seemed to have leveled off and stopped somewhere in the 3 years since his last MRI was done.

so that's good! (but confusing to me)

it seems to have stabled a bit, and has stopped shrinking.

for the time being.

 he could not tell me if it would continue to shrink later, or if it would remain stable.

he couldn't really tell me much.

the other thing it did show was 'signal abnormalities in the basal ganglia'.

(the basal ganglia is the base part of the brain, the part that controls movement)

which is not anything new, it has always shown this.

but the geneticist thinks (or hopes) that this finding can help at least point us in some sort of direction to begin some gene sequencing.

or at least rule out some other routes they could have gone.

so here's where i'm at.

my emotions are all over the place!

i mean, it's a good thing that the atrophy seems to have stablized.

it's just that now we're kind of back at square one, not really knowing anything.

i felt like when it showed brain atrophy, that was at least something we knew, something i knew, that was going on with my son, and i could relate that information when asked "what is wrong with your son?".

now i know nothing again.

i know his brain used to be shrinking, but for some reason it isn't anymore.

i know his brain is being affected, but i have no idea how or why.

i know he can't control any of his movements, but i don't know how or why.

i know he is moving, jerking, writhing, constantly, but i have no idea why.

i have no idea why.

i have no idea.

i have no idea how to think or feel anymore.

i have no idea how to help my son.

that is the hardest part.

so how do i feel?

i have no idea.

except it feels like your world has been turned upside down a little bit, but instead of just turning upside down and resting on it's head, it keeps spinning and turning and moving so you can't quite gain any sense of control.

kinda like that.

so the geneticist is calling a 'pow-wow' of all of connor's doctors, he wants to get everyone together to lay out all of connor's history and tests and results and findings.
and try and discuss what to do next.

he said he would hopefully have that scheduled for next friday.

and then i meet with connor's neuro-muscular specialist on Sept. 5th.

she will hopefully be able to relay the details of that meeting with me, along with some sort of game plan.

i hope.

i hope.

i always have hope.

<3