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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!

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 little silly

Hmmm ... these pics are 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 "hair-don't"?)

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“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.

First full day home from the hospital

Yesterday was our first full day with Alexandria home from the hospital. So we got to rest and watch some college football and let Alex just take it easy.

Drew at Don Pablos Mexican restaurant

Drew at Don Pablo's Mexican restaurant ... HAPPY BIRTHDAY Drew!

But it was also Drew’s 9th birthday, so that made for a super-eventful day for us guys! Drew invited his best friend Corey for a sleep-over the night before, then we all got up and went for an exciting time at the go-cart tracks … what a blast! (especially the “fast track” : )

And then we had a family birthday supper for Drew at his favorite Mexican restaurant (which happens to be one of Kristi’s favorites too!)

So overall, it was a very good first full day out of the hospital. Alex did have a few awake seizures during the day with Kristi, but she seems to be healing well from the surgery and moving toward a full recovery.

Thoughts from a father

(posted on Tuesday, Sept. 15th, 2009)

Lots of thoughts go through a father’s mind when his daughter is in the hospital. Especially when that daughter is being admitted because of seizures and the results of an MRI that showed abnormalities in her brain.

Here's all three kids on their first day of school -- and Drew's shirt says it all! :)

Here's Drew, Kaitlyn and Alex on their first day of school -- and Drew's shirt is a bit of encouragement even for today! :)

After taking over from Kristi yesterday and sleeping in the hospital room with Alexandria last night, I was grateful for Kristi’s return today to help Alex cope with three servings of the anti-seizure medication Ativan — a nasty drug that turned my precious Alex into one of those mental psych ward patients who can’t even move their lips right to make the the words and sentences they are thinking in their head. So frustrating! And when she finally started coming out of that, she had so many mood swings and strong emotions that are totally unlike her. But it all made sense as she repeated over and over that she didn’t want to be in the prison that she was feeling — knowing full well what she wanting to think, only to not be able to express it — knowing that she wanted to watch TV, only to be discouraged by the wobbly double-vision — and wanting and trying to sit up, only to be confronted with dizziness that in her words “pushed her back down into the bed.”

Kristi and I have been taking turns caring for Alex at the hospital in between managing the schedules and well-being of Dew and Kaitlyn. And tonight we were finally able to be all together in Alex’s room … and not only us! Alex’s good friend Aubrey and her mom Vickie and our friends John and Sarah were all there to share supper together along with lots of smiles and encouragement. And amazingly, we all fit nicely into the oversized room with which we have been blessed.

So we’re through a day and a half in the hospital, and the doctors are thinking Alex will be in until Friday (another three days). They will be roughly doubling the anti-seizure medication dosage that she’s been on for about seven years. And then if her seizures are under control by Thursday, they’ll do a minor surgery to repair the VNS device that is now malfunctioning. And after all of that, the pediatric neurologists and a neurosurgeon will continue to study and consider what needs to be done about the strange shape that last night’s MRI showed to be in the left hemisphere of Alexandria’s brain.

Today we were able to provide the neuro-experts with a CD of images from an MRI that was performed four years ago … so we’re hoping that comparing the old MRI with the new MRI will give the doctors some clear insight into what is happening and what might need to be done.

So that’s what’s been happening! Thank you all for your prayers and encouragement — we are part of such a huge support group! And this makes such a huge difference to me personally. Because somehow, even in the heart of a father who has cried for my daughter a lot over the past few days — there is now a peace that is deeper than my abilities and even those of the doctors. Because I know it is all going to work out.

What’s going on?

Drew, Andy, Kaitlyn and Alex

Dear friends & family,

You’re not alone in wondering what’s happening with the Corley family. Over the past number of months, I’ve heard both encouraging words and concerned requests from so many people … and now I’m finally able to give you a better picture of what our family has been going through this past year.

SABBATICAL
Since February 1st of this year, New Tribes Mission has graciously allowed a six-month sabbatical from full-time ministry so we can focus on two issues: 1) our marriage relationship and 2) the stability of our finances. These have both been growing concerns over the past five years or more. But it was only since May of last year that everything really started unraveling. And by November we had reached a stress level where divorce and bankruptcy were, for the first time ever, considered to be viable options.

COUNSELING

After spending a weekend at home talking about issues and options, Kristi and I decided to begin going to marital counseling to hear from somebody else what our options might be. We thought there were only two options: either 1) accepting what seemed inevitable and just getting a divorce, or 2) maybe somehow trudging through incredible barriers to see our marriage restored. But our counselor offered a third option: a “biblical separation.”

So we spent December planning how to separate our activities, our parenting, our finances, our expectations … and then we officially began that journey the first week of January. And I can say that this by far has been the most confusing and painful time of my life! But it has also been the most transforming months of my life.

FINANCES
As Kristi moved into an apartment and we started sharing “custody” of the kids each week, budgets that were already operating at bare-bones levels went dramatically in the red and both Kristi and I began working part-time, freelance and even night-shift jobs to cover the extra expenses … while also remaining available as a consultant for New Tribes, to continue validating monthly financial support from churches, families and individuals around the country.

And while it’s been frustrating to try and assign meaning and purpose to all the pain and struggles, what I’ve found to be most true is that God doesn’t waste anything. Every tension, every anxiety, every tragedy, every blessing … they all are pointing to a God who became flesh and experienced the same — and so much more — to show without a doubt that intimacy with the Father, through the Son, lived out in the Spirit, is the only life worth living.

MINISTRY
So that brings us to now. After more than seven months of semi-weekly counseling, six months of separation, and five months of sabbatical “rest” … Kristi and I, the NTM Personnel Office, and our counselor are all in agreement that full-time ministry is a thing of the past. And even our future as a unified family is outside of our control right now. And that’s why we’ve decided to resign from NTM at the end of the six-month sabbatical, on July 31st.

New Tribes has graciously offered to continue processing financial gifts until the end of July, and those finances will go — as they have all along — to support our family’s logistical needs so that I can help support the technical needs of NTM worldwide. This last month and even into the future, I’d like to continue helping the NTM Communications offices — especially with all the many website projects that are showing great promise for the future of global missions.

Drew, Kristi, Kaitlyn and Alex

FAMILY
But by far the most important focus that I have right now is on the needs of my family — Kristi and our three kids. We are all healthy, and even Alexandria’s seizures are totally under control! But there is still so much going on under the surface.

As of June 22nd, I accepted a full-time, salaried position as the “Database Administrator / Data Center Coordinator” of the Catholic Foundation of Central Florida, based out of downtown Orlando. And Kristi began working nights as a professional nanny and infant care-giver. These jobs allow the kids to spend time with both of us each day through the summer (days with Kristi and evenings/nights with me) … so I am very grateful for how well that schedule is working out.

We still have no idea of how things will be in the Fall … but we are planning to keep all three kids at NTM’s co-op, K-through-8 school in Sanford. We’ve just been so amazed by the quality of Christian education and care that each of our three children have received over the past four years at this school.

WRAP-UP
If you’ve been on our mailing list for very long, you know how grateful we are for your prayers and support. And I really hope we can stay in touch in the future, too. I’ve included our main contact information below so we can do just that if you would like. Please feel free to send us a message any time!

And may God truly bless you beyond all you can think or imagine.

Andy Corley
for Kristi, Alexandria, Drew and Kaitlyn

Andy’s cell: 407-415-4744 email: corleyman@gmail.com
Kristi’s cell: 321-696-3962 email: corley.girl@gmail.com

Internet programmer makes chocolate cupcakes from pancake mix

(posted by Andy Corley)

So my 5-yr-old daughter is graduating from kindergarten this week and her teacher tells me she would like to celebrate Kaitlyn’s birthday tomorrow since her birthday will be during the summer break.

OK, no problem. I’ll pick up some cupcakes or something for her to share with her classmates (it’s a small class).

Buttermilk pancakesOnly I never ended up making it to the store and now it’s 10pm after all the kids are in bed! So I got to thinking and realized I have two boxes of Wal-mart’s “Great Value” Complete Buttermilk Pancake Mix in the cupboards … and there just has to be a way to make cupcakes from pancake mix!

And sure enough, after only a few Google searches, I found the perfect recipe! I knew it could be done because I had some left-over chocolate chips to melt, sugar, eggs, milk, shortening (well, I’ll just put 1/3 cup oil instead of the shortening it calls for).

So there! I melted the chocolate, 3/4 cup sugar and oil together for easy mixing, added 1 cup milk (to cool it down), two eggs, 1 tsp vanilla extract, 1 cup pancake mix … and stirred it all together!

chocolate cupcakesThen, since I didn’t have any paper cupcake liners, I just did how Mom taught me years ago and buttered up a 12-hole cupcake tin and sprinkled some flour in and shook it around (oops! trying not to get flour everywhere). Then, guessing on how much batter for each cupcake, I ended up with about 4 tablespoons in each of 11 cupcake holes. Hmmm, hope it’s OK to cook with one hole empty!

So they’re in the oven now … on 375 F for 15-17 min. How do you think they’ll turn out???

Leave me some comments below and I’ll fill you in more tomorrow! Oh, and I do have some chocolate buttercream frosting — and maybe even sprinkles — to go on top! :)


COMMENTS:

“You go! What creativity!! I bet they were delicious!!” – Mom
(Monday, May 18, 2009 @ 11:44 pm)

“Anyone who can understand computers can DEFINITELY make cupcakes from pancake mix! You go! Proud of you, hon.” – Aunt Robin
(Tuesday, May 19, 2009 @ 6:50 am)

“WOW Andy that is amazing.
You have taught this grandma of 9 a new trick! Ü
Super job Dad!
Blessings from Ginger and family”
(Tuesday, May 19, 2009 @ 11:04 am)


Reporting back …
The chocolate “cupcakes” turned out to be a big hit!!!
chocolate cupcakes (done)… a wee bit soft (or nice & moist) but held together OK. On first analysis I thought they probably had a little too much chocolate and a little too much oil, but that just made them taste really good! And reports came back that the whole kindergarten class liked them a lot … including the teacher!

When I asked Kaitlyn what she thought of her birthday cupcakes she said, “What cupcakes? You mean the chocolate muffins?” So I guess without frosting she figured they were muffins. But she loved them either way. So overall, the project was a huge success! … thanks, Mom, for all those cooking lessons over the years. :)

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