New News

 Trust in him at all times, O people; pour out your hearts to him, for God is our refuge.
Psalm 62:8

I spoke on the phone with my friend last Thursday and told her that Emily had a neurologist appointment the next day.  I spent about an hour explaining how very, very sure I was that Emily's 48 hour EEG was normal; and that even if they [the doctors] saw a little something, there was absolutely no way I was starting that kid on seizure medicine. I wasn't seeing seizures. So I was not going to put her on a medicine that she didn't need. There was absolutely nothing her doctor could say that could convince me to put her on meds. 

All of that means that Emily had her first dose of her new seizure medicine last night.

Partial complex seizures.  Her EEG showed a lot of risk, Which are "spikes of abnormal" electrical activity in the frontal lobe on both sides throughout the recording period.  Day and night.  I could not have been more completely shocked. I'm still processing it.

Earlier this month Emily had a very itchy 48 hour EEG at home.  It was routine follow up because she had Grand Mal (convulsive) seizures at school in June, and last July at home.  I saw those as flukes and wasn't really concerned about it.

Emily having her EEG

I'd be lying if I didn't say it's a bummer.  I never like new news.  A new diagnosis, a new test, a new sickness, or even a new strain of flu.  It's something extra to do, to think of, to follow up on, to watch for.  Anything new in our busy life can easily become overwhelming.  

As is true with everything, this could definitely be worse.  We haven't noticed a lot of seizure activity; for which I am eternally grateful.  Seizures are scary. When the doctor explained what partial complex seizures might look like in Emily, we realized we had likely seen far more than we thought we had.  As much as I didn't want new medicine, I hope it will help with some of her symptoms. 

I asked her if she knew she was having seizures and she said she did.  With only a yes/no response I would've had to have known the right questions to ask her, which I didn't. That is really tough to take. She couldn't tell me and I couldn't guess.  I thought she was just being irritable or cranky.  She's already a little better on the meds, so some of that crankiness may have been some part of a seizure cycle.  I probably put her in time out for seizures before. 

She began complaining of headaches and generally not feeling as well a little more than a year ago.  I took her to the doctor and she had a CT scan, but no one suspected the possibility of  frequent little seizures being the problem. After we knew, she said she never had head pain, she just didn't know how to describe what she was experiencing (the word headache is on her computer she uses for communication).  She wouldn't have felt the seizure itself, but she may have realized it was happening and felt tired and cranky afterwards. 

I know that she is the same child, and God is the same God, and I am the same flawed parent.  This is just new information. Cerebral Palsy is not a progressive disease, but it doesn't ever get easier either.  We wait and we hope, but we also understand that new news comes frequently in our lives.  The only thing I can ever be absolutely certain of is that we are never alone and God is never surprised.  He NEVER gets "new news".  As I am I surprised and saddened, He is waiting to comfort.  There is refuge in knowing that my hope and my daughter rest in the arms Jesus. Refuge in being sure that the one who knows all, knows me.