Wednesday, July 22, 2020

A Puzzle

Who do I cling to?
From where does my help come?
My help comes from the Lord. 
Maker of Heaven and Earth. Ps 121

As many of you know Hannah has always been a puzzle to us. One of her early intervention speech therapists once described her like that, and even though it made me cringe a little, I think it defines her perfectly. As she grows older most of her decisions make sense to me once I figure out what she was thinking, but lots of times it’s like putting together a brain puzzle. 

One thing that a neurologist warned us about when she was 3 months old was the possibility of seizures. At that time, she had lots of other things going on so we just prayed that she would never have one and it would never be an issue. It’s actually a question I get every time we see a new doctor. And up until now I have always answered no. 

Well, it happened (see previous post) and even though I know many people have seizures and live fine lives with them I still did not want this for my daughter. I don’t like checking her every time she is lying quietly on the couch or feeling relieved when she comes into our room at 2am. 

Last week she had a routine EEG. Keith went with her and said she did very well. She sat the whole time and let them put tons and tons of probes all over her head. She was a rockstar, really. 

Going into this EEG we knew there would be abnormalities because her brain has been malformed since birth. But when a doctor schedules a telehealth visit at 9am on a Monday you know it’s not good news. Hannah’s seizure seems to have started some mis-firings on the right side of her brain. Left alone they could cause more damage. Medication is needed. We spent Monday waiting for her neurologist to call with an appointment which could possibly be the next day. 

After a lot of discussion between doctors it was decided that she could wait 3 weeks (insurance mandated wait period) for a follow up EEG. 

So we wait. 

This, unfortunately, is another piece of the Hannah puzzle. We pray that the right medication is easily (& quickly) found and that her hospital stay is as short as possible.