LGS

I've come in contact with another mother who's son has LGS.  He's farther along in it, because he developed it younger than Aidan did.  He had Infantile Spasms and then LGS hit.  This is common for children with LGS, and often they will even have other diagnosis like CP, because of the seizure damage so early on.  Aidan has huge muscle tone issues already because of the uncontrolled seizures.  It's been so heartbreaking to hear what such a tiny boy has endured already, and he's only 4.  He is about to have brain surgery, because the meds are no longer keeping the seizures at bay.

As I step back and look at what's gone on with Aidan, I can see this is a view into at least part of what the future holds for us.  And it scares me!

As I compare them, they have the same types of seizures, and they have the same effects from it. Aidan's just still at the stage of meds helping.  That will not last long.  His time of seizure reduction from meds is so short it's almost a joke.  I know we are headed in the same direction even though that's not the path we want to be on.  I'm not saying Aidan will for sure become completely non verbal or non mobile, each child is different and I know that.  But it is obvious he will continue to lose skills and it's very likely he will lose many of the same ones.
At the same time, my heart aches something terrible for this son and mother.  They are both so exhausted, barely making it.  As I asked for prayers on their behalf from my friends, I was given not only promises to do so, but tender homemade cards and pictures.  I am mailing a package today filled with them, and hope they will give these two a sense of how they are cared about.
And of course, we continue to pray for them.