Wednesday, June 05, 2013

Day Three at Miami Children's Hospital: Preliminary Report

Sleep deprivation was the goal last night. Mission accomplished.

The reason we are here at Miami Children's Hospital is to capture good data about Allie's seizures, to determine what kind of seizures they are, and to locate the part of the brain the seizures originate.

Monday, our first day in the hospital, we started the day with a thorough MRI. Allie was sedated for this three hour procedure. She had these specific MRI procedures done:
  • Functional
  • 3D
  • non-contrast
  • contrast
Here are some findings.

Allie is having tonic seizures. Her seizures originate in her brain's right frontal lobe. Doctors arrived at this conclusion with data gathered from the MRI as well as analysis of video EEG information captured during two strong seizures Tuesday morning.

Today (Wednesday, day three in the hospital), there has been discussion of another MRI. Doc's drastically reduced Allie's seizure meds to spur more seizures. This also deprives Allie - and the Charming and Beautiful Susan and me - of normal sleep which also causes seizure activity to spike.

A common discovery of an MRI in people with brain damage is the affected regions of the brain are shriveled. This never surprises doctors. Damaged areas of the brain are not used and, therefore, do not develop. They shrivel.

Docs confirmed that the damaged areas of Allie's brain have shriveled.

There's a finality to this report that makes me profoundly sad.


5 comments:

Anonymous said...

Bryon, thank you for sharing this. Ill be praying for your family as you continue the testing and hearing the results. She clearly is a very loved, precious little girl.
Stephanie Gunderson

Luann said...

Sometimes there are no words. Just know we are standing with you.

Bryon Mondok said...

Thanks, Stephanie and Luann...

B

Richard Mondok said...

Bryon,

We pray for Allie every day. And also for both Susan and you. The task you have accepted from The Lord is monumental. You have much courage.

What is the prognosis that makes you sad? I think from the very beginning of this adventure with Allie you knew the outcome. All you can do is your best and love her.

Judy and I love you guys very much. You are always is our thoughts and prayers

Love ya,
Dad

Bryon Mondok said...

Dad:

Great to hear from you. The thing that makes me so sad is that they saw the physical evidence of her brain shriveling. We're used to the physical limitations we can, but the internal ones, for some reason, come as a surprise. We forget how many parts work together in the human body and when we hear that another part has atrophied from lack of use, it's a sad reminder.

Even so, we are so blessed by Allie's life. She makes our lives worth living.