Alex’s EEG today

Yep, Alex is doing VERY well … walking without a cane, talking more smoothly all the time, determined to get herself back to “normal”.

Alex was supposed to fall asleep during this morning's routine EEG, but looks pretty awake! Good thing they're turning the lights off ... (she did just fine)

Here’s a photo of Alexandria at Pediatric Neurology, bright and early this morning for a sleep-deprived (on purpose) EEG.

She has still had NO SEIZURES since the surgery (PTL), and we’ve been allowed to reduce the less-active of 2 medications down to where she doesn’t have to take that one anymore at all! :)

Alex will be starting 7th grade in about a week, and apart from the physical and verbal limitations, the only thing that concerns us is that she still has some “twitching” sensations in the same places she used to have before the onset of a seizure. And she has also had a few “auras” at night where she feels a seizure coming on, but then it goes away. So we’re very encouraged by her recovery …and hope she will eventually even be off of her main anti-seizure medication Trileptol and still without seizures! :)

Update on Alex Corley (in rehab following her brain surgery in mid-March)

Bionic girl! Waking up those ARM muscles!

Bionic girl! Waking up those ARM muscles!

Update from Kristi:

Alex is doing REALLY well! We’ve been at Brooks Rehab Hospital in Jacksonville, FL for 12 days now. Alex has approx 5 hours of therapy each day, & I’m pleased with how far she has come.

Alex with one of her favorite therapists

Alex with one of her favorite therapists

Following the surgery, she couldn’t move her right arm, leg, and wasnt able to talk, but now she is talking in full sentences (slow, steady, & not nearly as frustrated as post surgery), & she is starting to bear weight while standing, & beginning to move her arm.

oh… one more REALLY important update! Alex hasn’t had ANY seizures since the surgery!

Look at her raise that right arm!!

Look at her raise that right arm!!

She did have a few “auras” in the week following her surgery (which the docs said were normal), but since then she hasn’t had any seizure activity! Before the surgery she’d have 4-5 MASSIVE seizures in her sleep, and I can testify that while I sleep next to her on this hospital bed (groan), she hasn’t had any night time seizures!

 

Alex is a great reader …

Hey ya’ll,

Alex, in a physical therapy session

Alex, in a physical therapy session

One thing that Alex probably enjoys most right now is reading cards, notes and even letters from friends and family!

Although her speech is (currently) limited, her reading is not. :)

If you’d like to send anything to Alex, here’s the address:

Alexandria Corley
c/o Brooks Rehabilitation, Room 2215
3599 University Blvd. South
Jacksonville, Florida 3221

Also, you can see the latest photos of Alex in physical therapy, etc. even if you don’t log into Facebook. The public photo gallery can be found here:
www.facebook.com/album.php?aid=112853&id=648431586&l=b6273253b5

Good to be home! (well, not all of us)

Oh, I can’t tell you how good it feels to be at home! The only thing that would be better is if Alex and Kristi could be here with me – and here with Drew and Kaitlyn.

After talking with doctors and finding out that insurance would cover the physical therapy and speech therapy that Alexandria needs — at Brooks in Jacksonville, the second largest inpatient rehabilitation hospital in the US — we requested the transfer and were granted an official transport around noon today! (Thursday)

The plan is for Kristi to be with Alex in her room on weekdays across the next 3-4 weeks, Kristi’s sister Lori will pick Drew & Kaitlyn up from school each weekday and bring them home (Lori lives in the apartment behind our house), and I will work my normal day job in Orlando, see the kids in the evening, and then take everyone to Jacksonville (FL) on the weekends! Phew, how’s that for a plan?

Alex's first visitor in Jacksonville

Alex's first visitor in Jacksonville (a beautiful Yellow Lab service dog who lives at Brooks)

I’ve heard from Kristi and they are all settled into their room and ready to begin some intensive rehab starting tomorrow. And if all goes as expected, Alex should have a full recovery and return home walking and talking just like before, but with NO SEIZURES!!! :)

So please continue to pray first and foremost for Alex’s healing. And then pray for all the logistics and planning details for each day of each week over the next month or so. I definitely desire this to be a time of healing for Alexandria, but I also would love for it to be a time of mini-vacations for our whole family as we go to Jacksonville each weekend. Maybe that’s a bit of a stretch … but if you know of any good activities or family adventures to be had in Jacksonville, please let me know!

Thanks so much for being a part of this “event” and for praying. You are definitely making a difference!

- Andy

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

A few more days in the hospital …

Dear friends,

Uncle Dan & Alex

Uncle Dan and Alex, smiling in spite of the central line and multiple other IVs & old IV sites. Dan had to fly back to Denver last night (Sun), and we will definitely miss him!

Yesterday and today were plenty tough, mostly with managing Alex’s pain, agitation, independence and self-sufficiency. She really wants to do everything she used to do – reading, writing, time on her laptop and Nintendo DSi, not to mention walking and using the restroom on her own. So I think the hardest part of everything has been the fear and frustration of being disabled … although her doctors are telling us that they are still expecting a full recovery.

Today we had visits from all the main physical therapy doctors, did some special exercises and began talking about the 3-4 weeks of in-patient rehab that Alex will need. And we’re looking at possibilities both in Jacksonville and in Tampa since nothing like that is available in the Orlando area.

Tomorrow we have an EEG scheduled for 6:30am, so we’re trying to get to bed early … and then we’re hoping to have this hospital stay wrapped up by sometime on Wednesday. :)

Again, thank you so much for your prayers and concern. I really don’t think we could survive without the support of so many like you.

- Andy

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

Post-op update from the hospital (for Alexandria)

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

Neurologists & tests today

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

Surgery update

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

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
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)

VNS appointment today, MRI scan tonight

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! :)