Thursday, June 6, 2013

Last Friday evening, I noticed it.

It's certainly not like I ever pictured so I brushed it off.  John brushed it off.  Still kind of freaked out by the events, we brushed it off and went on with our weekend. 

It wasn't. 

It couldn't be.

And then it happened again.  This time during physical therapy.  And this time, around someone who knew what it was. 

I have to admit I'm not a fan.  In fact, I'm mad as hell.  At this point we should be getting rid of specialists, not adding to.  Of all the ones we do see:  Cardiology, Pulmonology, Physiatrist, Genetics, Pediatric Surgery, Pediatrician, Ophthalmologist, and Gastroenterologist.

But not neurology. 

Until now.

Since Friday, Alli has has had 5, possibly 6.  Most are thought to be Petit Mal Seizures, although there have been a few with tremors, eye rolling, color change, and falling over limp.  Those have not been actually characterized yet, so I won't even begin to say what they were. 

Did I mention I'm not a fan? 

After further talk, we believe she's actually been having seizures for some time.   

We're just now making the connections. 

Next Thursday, we will take Alli in for a sedated EEG.  It's likely we will not see a neurologist until after the EEG is read.  Regardless, we've made the decision to travel to Chattanooga to see a pediatric neurologist instead of staying in Knoxville.  This Mama and Daddy want answers and now.  We've heard amazing things regarding this doctor and are ready to get the ball rolling....yesterday. 

This is just another piece of the puzzle.  And while I'm battling anger and anxiety I also know that this can and will be used for something.  Beauty for Ashes.  It is written. 

"These trials are only to test your faith, to show that it is strong and pure. It is being tested as fire tests and purifies gold -- and your faith is far more precious to God than mere gold. So if your faith remains strong after being tried by fiery trials, it will bring you much praise and glory and honor on the day when Jesus Christ is revealed to the whole world." ~Peter 1:7

And in the words of my sweet Ava Liz, "Bring it!"


1 comment

  1. So sorry you and Alli are dealing with the added stress of seizures. So scary. I am not a fan either. I hope you get answers and the right medications (or other treatment) that can get the seizures under control. xoxo


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