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Thursday, January 29, 2009

EEG Number 5

Today was Henry's first neurological appointment since leaving the hospital.  After a steady stream of good news over the past couple of weeks, today served as an unwanted reminder that Henry does indeed have a serious brain injury.  

He began this morning with an EEG at Evanston Hospital, followed by a visit with his neurologist.  Although Henry is not exhibiting seizures, during this 90 minute test his brain demonstrated electrographic seizures nearly half of the time.  

The neurologist does not want to continue his phenobarbital, so he is recommending that we move Henry to Keppra.  Keppra is not well-studied in infants, but has been proven to be effective and "safe" in older children.  Our course of action is to begin Henry on Keppra and have another EEG in 2-3 weeks.  If this EEG is improved, we will then stop phenobarb.  Henry would be solely on Keppra, which we would reevaluate after a couple of months.  If Keppra is not effective, we move to plan C.  We're not sure what plan C is just yet.

Henry's head size is not increasing quickly enough, indicating that his brain is not developing properly.  While we were once concerned that his head might be getting too large, we are now concerned that it is too small.  Unfortunately, we can do nothing to assist with this.  We'll just continue stimulating him as much as possible and monitor his head size as one indicator of brain development.  

OK, time for some good news.  After just one week, Henry is taking about half of his daily milk volume via a bottle.  We begin each feeding with the bottle, and when he finally loses interest, we feed him the remainder through his NG tube.  We are all thrilled that he is doing so well.

Last weekend, Henry attended his first organ and brass concert.  Here we are getting ready for the show:



And here are some visitors:










PenJames said...

We are still hoping for that miracle...

Great news about the bottle feeds though. And lovely to see the photos of him growing up - interested in his visitors, reaching out etc. Just gorgeous. x

wjones7412 said...

Go steelers!

I hope Henry enjoyed the concert, and I'm so happy about the bottle. Good luck with the new meds. I really wish I was close enough to sing Henry a song.