Alexandria’s surgery timing

Dear Friends,

We just found out the specific date for our oldest daughter’s brain surgery. But before I go into that, let me give a quick background (well, I’ll try to keep it quick).

As you probably know, my daughter Alexandria (Alex) has dealt with seizures for 11 years now, since she was one year old. We’ve worked with neurologists first in Nebraska and then here in Florida, both from Orlando and from Miami Children’s Hospital. And now, over the past three years or so, a great team of the best and brightest pediatric neuro-specialist have been assembled from Miami and Orlando (really, from the whole state!) … and are now all working together at Arnold Palmer Hospital here in Orlando.When Alex was three years old was the first time that her seizures were really unmanageable. She started having five or more a day so we admitted her to a hospital in Sanford – and they transferred her to Arnold Palmer Hospital in Orlando where, in spite of their best efforts, she only got worse and was having as many as 40 seizures a day! So after more than a week of their best efforts, the doctors ended up transferring Alex to Miami Children’s Hospital.

The rest is a long story, but by using a special 3D SPECT-scan, the doctors in Miami did end up finding a tiny lesion of abnormal tissue on the left hemisphere of Alex’s brain from which the seizures seemed to be originating. However, since that lesion was on the “motor strip” – the part of her left hemisphere that controls the motor skills on the right side of her body – surgery was not an option at that time.

Since that time – over the past 9 years – Alex’s seizures have been mostly control by 3x daily medication and a special VNS implant. Normally her seizures only happen while asleep (every night) and maybe once a day when she might have missed a dose of her medications (which have needed to be adjusted as she has grown and developed).

But just over a year ago Alex started having 3-4 seizures while awake each day, so we took her into Arnold Palmer. They did an MRI and were alarmed to see that the “lesion” had increased to about the size of a ping-pong ball. So that’s when the new team of neurologists started getting very interested and walking with us toward the possibility of brain surgery.

So that brings us to the present. We’ve taken Alex through a whole battery of tests over the past year with this team of doctors, and without doing anything different we’re starting to see her seizures get stronger and also a marked weakness and numbness in her right arm and hand (she’s left handed).

Monday before last we had a meeting with about 20 pediatric neurologists, neuro-surgeons, behavioral specialists, etc. at Arnold Palmer and received a very detailed briefing and preparation for the very serious brain surgery that they all agreed should happen soon.

This last Monday we had one last SPECT-scan with EEG, and that was just looked at by specialists earlier this week.

Now, today, I received word that the doctors all want to do the brain surgery on Monday, March 14th. Wow. That’s only one month away! She’ll be out of school for the week before Spring Break, the week of Spring Break, and the week following. But we are definitely hoping for the best possible outcome – no more seizures!

Please be praying for Kristi and I as we prepare ourselves and our family for this very serious, life-changing operation. Both sets of grandparents will be in town to help, so we will definitely have plenty of support. :)  But most importantly, we believe this is a part of God’s plan for Alexandria, and our beliefs are supported by much advice from all kinds of specialists and very educated neurologist and neuro-surgeons who have studied Alex’s case for years.

Thank you so much, and I’ll try to keep us all updated as we go through the next month and then through the operation and recovery time.

- Andy

Alex is a fun-loving pre-teen
(click for a larger photo)

VNS – Vagus Nerve Stimulator
(click for a larger photo)

Arnold Palmer Hospital
in downtown Orlando

This is Alex’s latest test,
shown here getting an EEG
just before going into the
SPECT-scan machine
(she asked for this photo
to NOT be enlarged :)

The Corley family
(from a couple years ago)