Mar 18 2011

Post-op update from the hospital (for Alexandria)

By corleyman and has 2 comments.

Dear friends,

Thank you all so much for your prayers … here’s an update.

We were glad that Alex was able to sleep at least 5 hrs last night (between a CT scan and an MRI), but throughout the evening after surgery and then most of the day today have been very difficult.

In addition to the normal disorientation from coming off of anesthesia, Alexandria (and Kristi and I) have been fighting fear as we realized that her right side was definitely weaker – and for the first couple hours she couldn’t move her right arm or leg at all or feel her lips and right cheek – and all of that was being communicated by frustrated gestures alone because of the (normal) brain swelling that has frustrated her speech abilities.

Alex is sleeping now, because we’ve had visits from neurologists, physical and speech therapists, various other doctors, and our favorite music therapist throughout the day today. But we have been reassured that the small movements in Alex’s right foot, hand, neck and face – and her ability to say words like Mom, Dad, no, ya, aow and “ma” for milk – that all motor and speech abilities will return 100%, probably within the next 1-3 weeks.

Again, thank you for supporting us through this time, and – since we haven’t seen a seizure since Monday night – we look forward Alex continuing to be SEIZURE FREE from now on!

- Andy

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More updates on Facebook: http://www.facebook.com/event.php?eid=191786667528752

Categories: Alex's Blog, Family
Mar 16 2011

Neurologists & tests today

By corleyman and has no comments yet.

Thank you all for sticking with us through this time.

Just to “recap” … Alex came through her first surgery Monday and has been recovering all day yesterday.

Within the next hour or so, a number of neurologists will be here to run some tests, applying electical currents to sensors in Alex’s brain to see what parts of her body are affected and what sensations they cause her (she’ll be fully awake and responsive). The doctors have already monitored some seizures over the last couple nights and can see from the sensor grid exactly where they are coming from … but just need to see if there is any normal brain function from that area before they cut that section out in the second surgery tomorrow.

Thank you so much for your prayers and support!

- Andy

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More updates on Facebook: http://www.facebook.com/event.php?eid=191786667528752

Categories: Alex's Blog, Family
Mar 14 2011

Surgery update

By corleyman and has no comments yet.

We’ve all been here at Arnold Palmer Hospital since yesterday afternoon.

This morning Alexandria did really well in pre-op around 7:45am & then went into the O.R. for anesthesia, extra I.V.(s) & respirator. Since then we’ve heard good updates and notification that the 4-hr surgery to place sensors on her brain began at about 9:15am.

We’re trying to make the updates as simple as possible to post, so for more updates, please join the Facebook event online at:
http://www.facebook.com/event.php?eid=191786667528752

We are amazed by all who are praying and joining with us … so thank you all for your prayers and love!

- Andy

Categories: Alex's Blog, Family
Feb 11 2011

Alexandria’s surgery timing

By corleyman and has no comments yet.
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
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)
Categories: Alex's Blog, Family
Apr 05 2010

VNS appointment today, MRI scan tonight

By corleyman and has no comments yet.

Just got confirmation that I’ll be taking Alexandria to a neurologist appointment this afternoon, so they can turn off her VNS device in preparation for her MRI later tonight.

The MRI will be a standard 30-minute brain scan, and will allow the doctors to see what has happened since September, when her last MRI showed a spherical-shaped mass in the left hemisphere of her brain.

We are very excited about this MRI especially because:

  1. We’ve felt led by God to pray for supernatural healing over the last month, and …
  2. The recent SPECT scan results showed the doctors almost the opposite of what they were expecting to see …

Thank you for your support and encouragement as our family continues to simply walk the road that God lays out in front of us.
… and we’ll update this site when we hear more! :)

Categories: Alex's Blog, Family
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