Road to Recovery

Blessed Be Your Name has been passing in and out of my mind all day.
"In the road marked with suffering, though there is pain in the offering, blessed be your name"

Clingy and pitiful is how I would describe Oliver today. It has been a year since I have seen him in pain like this and it is hard every time. Clearly, we are doing the right thing for his long term prognosis, but the suffering of a child is hard to watch, as any parent knows...

I wanted to clarify what we can expect from this surgery...I don't think I've been doing a good job on that front. To my knowledge a VNS has never made any person seizure free; it is an adjunct therapy. He'll stay on his seizure meds as this VNS is an addition to those medications. Best case scenario from the VNS is 50% seizure reduction. You can't tell if the VNS works well for at least 6 months to a year. So this is a LONG process.

Here is the VNS outcomes breakdown for those treated for Epilepsy:

1/3 of people get 50% seizure reduction
1/3 of people get some seizure reduction
1/3 of people it does not help at all
0 people get seizure freedom-that was possible only with the brain surgery or God (or a combination of the two!).

Of course we wanted to be in the miracle half for Oliver's brain surgery last year (we weren't). Now we hope and pray to be in the miracle third with the VNS.

What is the aim of VNS therapy?

"VNS therapy aims to reduce the number, length and severity of seizures. For some people their seizures become much less frequent, for some it may reduce their seizures a little, and for others it has no effect. VNS therapy may reduce the length or intensity of seizures, but this does not happen for everyone. It may also reduce the time it takes to recover after a seizure. It is unlikely to completely stop seizures and it does not ‘cure’ epilepsy.

The effect of VNS therapy may not happen straightaway; it can take up to two years for it to have an effect on someone’s seizures. It is used alongside anti-epileptic drugs (AEDs) not instead of them. If VNS therapy works, it may be possible to reduce a person’s AEDs over time. "

Thank you to the many, many folks who have helped shoulder this one with us. From the food to the flowers and everything in between, you have blessed us more than you know.

I'll leave you with this:

Beauty in the ashes, that is always how it goes

if you have eyes to see it
if your heart hasn't grown too hard from the exhaustion of it all

For those who have brought beauty into this very hard thing called a rare genetic disorder and intractable epilepsy.

We thank you. We love you.

From the bottom.of.our.hearts.