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! :)

Incredible, inspiring video! (and a quick update & request re: Alexandria)

This is more than just an Easter video. I just previewed this online and was so encouraged and strengthened by the message. I hope it inspires you, too:

HAPPY EASTER!

- Andy

p.s. We are still trying to work out scheduling for Alexandria’s next MRI at Arnold-Palmer Hospital (this seems to be a very busy time right now). Please pray for coordination between our neurologists’ offices, MRI techs, and general scheduling obstacles. And please join us in asking Father to show clear direction from this MRI — either to show indisputable evidence of His healing hand at work, or to indicate that brain surgery is our next step …

p.p.s. Also, as you consider what God is doing — and as He brings Scripture to mind — will you please use the comment box below to share those specific passages with us? Thank you so much!

Yesterday’s SPECT Scan

Kristi and Alexandria, preparing for the SPECT scanFirst of all, I just want to say that God is so good! I’ve uploaded some cell-phone pics so you can see Alex (and Kristi, too) as we sat through the long test there at Arnold-Palmer Hospital for Children yesterday.

The doctors and the hospital were extra busy, so we didn’t get to see any of Alex’s doctors. And while we did not see any overwhelming physical signs of God’s healing of the mass in Alex’s brain or of her fingers, both Kristi and I felt comforted, had peace through the process, and were able to rest in the work that God is clearly doing. We both sensed in our spirits that God was doing something even while the test was being performed — and we’ll know much more next week, after Alex’s neurologist has had a chance to look at the images from this SPECT scan.

Thank you all for praying! … and we wait in expectation, continuing to pray with thanksgiving for the work that God is doing.  :)

- Andy

p.s. Here’s a few more photos of the testing:

Starting the SPECT scan

Starting the SPECT scan

Helping the SPECT scan machine get as close as possible

Helping the SPECT scan machine get as close as possible

SPECT Scan on Friday

Arnold Palmer Hospital for ChildrenIt looks like Friday (tomorrow) is going to be another interesting day at the hospital. Alexandria is scheduled for what they call a “SPECT scan“, where the doctors inject a special dye/tracer liquid into her IV just before doing a CT scan of her brain. Then, depending on where the tracer concentrates in her brain, the doctors are able to zoom in on that specific area and see 3-D imaging of what’s happening.

This specialized test will be an out-patient procedure at Arnold-Palmer Hospital for Children, and should only take a couple hours. But we are also looking forward to the great conversations that we normally have in the hospital with Alex’s neurologist and/or neurosurgeon.

Please feel free to pass any part of this message on to others who are praying for Alex. Our family is praying for God’s complete healing … but in the medical world, Friday will be “step 2″ in about four steps of testing that need to be completed before the neurologist and neurosurgeon schedule brain surgery as a cure for Alex’s daily seizures.

Also, especially for those of you in the medical field, here’s a couple pages from Alex’s EEG monitoring last month.

Quick update, more to come …

Nurses call her "Smiley"

Nurses call her "Smiley"

Thanks so much to all of you who have been praying for Alexandria while she was in the hospital! Apart from her I-V taking eight tries!! … everything else went well and we are safe at home resting and recovering. :)

If you think of Alex throughout the day, please pray that she would do well in school … especially in the afternoon. Because her neurologist (wonderful doctor that he is) doubled her afternoon meds in order to combat her daily afternoon/evening seizures. The strategy seems to be working, but the meds cause her to be very groggy and even dizzy sometimes!

Oh, and we now have a really good idea of the next steps that we will be taking to prepare Alex (and all the rest of us) for a possible brain surgery to eliminate Alex’s daily seizures. So keep praying for wisdom with all of that, and I hope to update you with more specifics soon!

- Andy

E.E.G. testing in progress, encouragement from neurologists

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Everything is going good with Alex’s tests here at Arnold Palmer Hospital. Alex doesn’t like all the probes and electrode gel in her hair, but she’s found plenty of TV shows that she likes. :)

Alex’s neurologist Dr. Davis has been by twice to check up on us and explain a few things — and his associate Kay, too. And Alex’s neurosurgeon Dr. Pattisapu‘s partner Dr. Johnson has also stopped by to familiarize herself with Alex and the challenges that we’re considering here.

The best news that we’ve heard so far is that the monitoring is showing that all five of Alex’s seizures last night were originating from the exact same area — right where the pingpong-ball-sized mass is located in her brain.

So the plan is to stay a little longer tomorrow (Wednesday) after the 48-hour EEG and do a fresh MRI of Alex’s brain. Then Dr. Davis will schedule an outpatient “neoro-psych” evaluation, where Alex will be asked all kinds of questions to get a good base-line of what cognitive skills she has right now, to compare with what might be “lost” after surgery.

This is of course very sobering, but it’s good to see all the doctors taking a very measured approach to the surgery option … studying to see what strengths and weaknesses Alex has now (weaknesses including seizures every day) … so we can work toward an outcome that will benefit her most. For example, it would be acceptable for Alex to end up with a few speech issues to work through after surgery if the surgery completely stops the seizures!

So that’s the kind of thing that we’re considering right now as we look forward to the day when Alex will be able to run and play — and even one day drive a car! … without seizures. So we thank you so much for your thoughts and prayers on our behalf!

Hospital pics

Alexandria is such a super-star patient!
I just had to take some cell-phone pics of her time here. :)

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Loving the electric hospital bed

Loving the electric hospital bed & all the settings

Nurses call her "Smiley"

Nurses call her "Smiley"

Cell phone camera wars!

Cell phone camera wars! (she fights back :)

Hmmm ... these pics are a little silly

Hmmm ... these pics are a little silly

EEG monitor ... reading Alex's brainwaves!

EEG monitor ... reading Alex's brainwaves!

One of the more tasty hospital meals

One of the more tasty hospital meals -- she ate it all!

Oh, and she just LOVED the hair-do

Oh, and she just LOVED the hair-do (or would this be a "hair-don't"?)

“Seizure Report”, by Alex Corley

Alex Corley

Here’s a fairly detailed report that Alexandria just finished writing from her perspective, for a school project that was due today. The information is both informative and timely, with some of her history and what’s coming up next too!
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Seizure Report

by Alex Corley

A seizure is a sudden burst of electricity in your brain, very much like a tiny bolt of lightning. This electricity is a signal that causes your body to feel different, or makes your body do things that you can’t control. Sometimes the electrical signal only reaches part of your brain. Then a part of your body, like an arm or a leg, may move on its own. If the signal goes all through your brain, you may shake all over or may fall asleep for a short time. The whole seizure is usually very short—only a few seconds or perhaps a minute or two.

Imagine a room full of mouse traps. Instead of putting cheese in the mouse trap, we put a ping-pong ball on each trap, and there’s not a bit of space in this entire floor where I haven’t put a mouse trap and a ping-pong ball. What if I just throw one ping-pong ball into that room? What’s going to happen? It’s going to hit one, which will bounce, hit two, which will hit four, which will hit eight and before long, the entire room has got ping-pong balls flying in it. That’s a little bit like what happens with a seizure. Irritation in the brain may start at one area of the brain and then spread until it eventually takes over the entire brain.

Doctors aren’t always sure why kids have seizures. Some kids have seizures by hurting their head in a bad accident. Others have an illness that injures their brain. For most kids the doctors cannot find out what causes their seizures.  My seizures started when I was one year old.  The doctors couldn’t figure out what was causing my seizures.  But recently they found a mass in my brain about the size of a ping-pong ball right here (point to my brain).

There are two main types of seizures.  The most common type is called a generalized seizure.  Someone who has generalized seizures may fall and black out.  The muscles will twitch and jerk.  They usually last for several minutes.  People usually feel tired and sleepy when it is over. The second kind of seizure is called a partial or focal seizure.  It involves a small part of the brain and may cause someone to just stop and stare.  My seizures are like the generalized seizures.  I fall to the ground and black out.  It lasts for about a minute, and when I wake up, I feel very tired, and very hungry too!  The doctors don’t know why if feel hungry after my seizures.

The good news is that most seizures can be controlled with medicine.  People can do most activities as anyone else.  For some people, medicine does not work.  These people may decide to have brain surgery.  Doctors can sometimes remove or repair the part of the brain that sends mixed up signals.  In two weeks I am going to the hospital for some tests. They will decide if I am going to have brain surgery to stop my seizures.  The vagus nerve stimulator (VNS) is another type of treatment.  The VNS battery is a little larger than a quarter.  The doctor puts the battery under the skin in the chest.  The battery sends a signal to the brain through the vagus nerve, a nerve in the neck.  The vagus nerve is one of the twelve cranial nerves in the human body; it is like a computer system for the brain.  The signal from the VNS can help stop or prevent seizures.  When I was in the hospital a couple months ago, they replaced my VNS, and it has helped me.

People who take seizure medicines have to take them every day, or even many times a day. Imagine that the medicine is putting the seizures to sleep inside your brain, but they don’t go away. If you forget to take your medicine, the seizures might wake up. Even if you don’t have any seizures for a long time, you still have a seizure disorder, so the seizures probably would wake up again if you stopped taking the medicine.  (show my medicine) This is all of the medicine that I take every day.

Seizures can be very scary. If you wake up after a seizure and everyone around you is worried, you may worry too. But the truth is that kids almost never die from having a seizure. Most seizures last just a few minutes and kids are back to normal after a short rest. Last week I went to Wal-Mart with my mom.  We were trying to find a card for my great-grandmommy for her birthday.  I was looking for a card in a different isle than my mom, and suddenly, I had a seizure and fell to the ground and hit my head.  It made a huge bump.  After I woke up, I heard everyone saying, “Help! Please help!”  A lady called for help and my mommy came around the corner to me.  People were scared and they were calling 911.  I was OK once my mom was with me, and I didn’t have to go to the hospital.  Usually I can feel my seizures coming on, but for the past few days, I haven’t had much of a warning.

Most kids with seizures can ride their bicycles. They just have to be sure that they always wear a bike helmet and stay away from dangerous places.  They can also do lots of other sports. They just need to be a little more careful than other kids. Some people think that kids with seizures shouldn’t go swimming because they might have a seizure in the water and drown. But if you don’t have too many seizures it should be OK for to go swimming in a pool if an adult is watching closely.

I don’t really like having seizures.  But I’m so glad that I have good friends that love me anyway.  I’m glad that God keeps me safe.  I hope one day I won’t have any more seizures.