If you scream, can God hear you better?

Gage's neurologist called today with the EEG report.  He is now having atonic drop seizures.  These are occurring in the same region that the focals seizures were coming from so we are adding another medication to treat those.  So far the keppra, which is used to nip the focals in the bud, is doing it's job and hopefully adding this second medication will stop the other kind too.  This does not change his prognosis, but it is something that we need to treat so he can continue to thrive as he has been.

This was not something that we wanted to hear but I still praise God even as I want to scream and cry and hit something.  He is and has come so far in such a short time...that's what his awesome neurologist kept telling me on the phone as I sobbed into his ear.  He's such a sweet man.  I can't imagine it's every doctor's wish to console a hormonal pregnant woman over the phone about her child, but he did.

What's our next step?  Deep breath...here goes.  We are going to do a repeat MRI very soon as well as a lumbar puncture while he is under to test for any metabolic disorders that could be causing the seizures.  We will also be doing a MEG scan.  A MEG scan is used in conjunction with the MRI when looking for any abnormal brain tissue that may be causing Gage's seizures.  Though surgery is not on the table yet these are all preliminaries to see if he is a candidate.  Can I be hopeful that this may be the answer for us?  That surgery may take all this away and allow my child to be free of medications?  Part of me says yes, while the other part of me is so fearful of that possibility... Cutting into my child's brain?  How can I want that at the same time not want that freedom for him?

Plenty of people live with epilepsy and lead enriching lives.  They have families, they go to school, they drive cars, have successful careers... But I still hate it.

Peace has already settled over me.  Gage is a fighter and so am I with God in my corner.  

One more hurdle...

Gage's eye doctor appointment today went... ok.  I knew he had some delay there as well, with his vision, I just never expected to hear that he was only seeing on a 4 month old level.  Structurally, his eyes are beautiful and he has no need for corrective lenses.  Instead he's visually impaired in the neurological sense.  I was told that in 75% of cases like Gages, who had IS, these vision impairments do improve with therapy, but by how much I don't know.  Gage's neurologist feels like he just needs more time and that with therapy in six months time his vision will improve dramatically.  Does it make me a horrible parent to wish that this could all be corrected with glasses?  For once I just want something to come easy for him.  He's such a happy baby.  I can't count on one hand the number of times he's actually cried because he was mad.  I want so much for him and it kills me that there's one more thing that he will have to work his ass off for.  I'm angry for him, hell I'm just plain angry at everything because this just all sucks so much sometimes.  I feel guilty for feeling this way when so many others have it so much worse, but right now in this very moment I can't help but want to beat something.  Life isn't fair.  I know that, I've been taught that, I've seen it first hand, but I can't help but wish things were different...easier.  Most of the time I'm ok with everything.  Gage is improving dramatically.  He's reaching milestone after milestone.  His vision and eye contact has gotten better since he's been seizure free.  He's showing me that he will never ever give up and he's taught me that no matter what life throws at you there is no other choice available to us BUT to take a deep breath and continue on.  The sun will rise again tomorrow even if you feel like your entire world is being destroyed.  He's taught me that when we do wake up on that next day we can choose to either fight or lay down and wallow in misery.  Tomorrow I know will be better.  I'll start researching services for vision therapy and buy all the books that I can find in regards to that subject, but tonight I just needed to vent a little.