Happy New Year!

Dr. Ron Davis of Pediatric Neurology, PA

Dr. Ron Davis of Pediatric Neurology, PA

I know, it’s been a long time. So here’s a quick update on what’s going on with Alex.

We talked to Alexandria’s doctors last month and found out that their new, advanced brain-scanning and monitoring equipment had not yet been installed at Arnold-Palmer Hospital. So that’s the main hold-up. But we weren’t too disappointed with that news because it has given us some time to just enjoy the holidays. :)

So for now, we’re just waiting for Alex’s next appointment in a couple weeks to find out what new time-line Dr. Davis and Dr. Pattisapu would like to follow. And in the meantime, Alex will continue taking her anti-seizure medication three times a day — and we pray that the seizures remain mostly under control.

Upcoming “fMRI with grid” testing

Both of Alex’s appointments last week went very well. One was with the neurosurgeon Dr. Pattisapu, and the other was with her pediatric neurologist Dr. Davis. And both specialists are very confident that the best thing for Alex is to move forward with the more invasive testing in a couple months.

So right now we are preparing Alex for that time by changing Alex’s medicines & dosages around to better control her seizures. And so far, the changes seem to be working.

Then, in about a month we will meet again with Dr. Davis to begin planning for the procedure that they are calling an “fMRI with grid” … meaning “functional MRI” (an MRI to watch for specific patterns related to motor function), while applying a “grid” of sensors directly on the surface of her brain.

And that testing will give MUCH more detail and accuracy as to exactly what is happening with Alex’s seizures … and whether the mass that they found in her brain is causing the seizures and/or if it can be surgically removed.

Scary stuff when you start talking about brain surgery on a 10-year-old daughter! But it is in God’s hands, and Kristi and I are both resting in the understanding that SO MANY things have come together supernaturally to get us to this decision point right now.

And we know that all the doors are wide open right now for us to simply walk through … of course with many, many prayers for Alex’s safety and specialized care.

Doctor visit today

Alexandria, in her class at school

Alexandria, in her class at school

Well, it’s quite a bit more than just a “doctor visit,” but you can’t really title a blog entry “Pediatric neurosurgeon visit today.” :)  So anyway, that’s what’s going on today. Alexandria will miss some school in favor of a very important and exciting appointment with Dr. Pattisipu!

It’s crazy to think that it’s already been two weeks since Alex was released from the hospital. But her incisions are completely healed, so that makes sense.

Overall, Alex is doing very well. Although she does still has a seizure or two each day (and more at night), she has adjusted well to both the new VNS implant and the higher dosage of anti-seizure medication. We’re still working with Alex to encourage up to twelve hours of sleep each night — an important factor in how many seizures she’ll have in the day-time — but at least the seizures are fairly manageable right now.

Another relief for us is that we’ve received full confirmation that Alex’s continuing visits with the best pediatric neurologist and pediatric neurosurgeon, although outside her insurance coverage network, are going to be covered 100% by her health insurance! This is not only a relief when thinking of Alex’s last hospital stay that probably tallied more than $100,000 — but it also allows us to move forward with regular visits starting this week!

After Alex’s visit with Dr. Pattisipu today, she has an appointment tomorrow with Dr. Davis, her pediatric neurologist. And from those two appointments, we hope to have a better idea of when future scans and brain-mapping procedures will be scheduled.

My hope is that through the new studies that Dr. Davis and Dr. Pattisipu are about to initiate, we can not only find a cure for Alexandria’s seizures, but also be an encouragement and help to many other families of children who suffer from similar seizure activity.

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.

Surgery Update

It’s so good to be in the calm AFTER the storm right now.

VNS implant

VNS implant

Alex is resting comfortably in her hospital bed after a successful surgery and is getting used to the incisions and the brand new VNS device just under the skin near her shoulder/neck.

Dr. Pattisapu

Dr. Pattisapu

Dr. Pattisapu was very encouraging with Kristi and I after the surgery and explained everything from what the problem was with the VNS implant to what options we can start thinking about for future studies and “brain mapping” to determine if brain surgery will be an option for Alex in weeks and months to come.

But the plan for now is to keep Alexandria at Arnold-Palmer Hospital for one more day to make sure that the new medicine dosages and the new VNS implant are keeping her seizures fairly stable. Then we are hoping to be released from the hospital sometime tomorrow. We can’t wait! :)

VNS Surgery Today

Alex & Kristi, just before Alex went in for surgery

Alex & Kristi, just before Alex went in for surgery

Kristi and I just sent Alex into the OR with her entourage of doctors, nurses, anesthesiologist, and VNS representative.

We’re happy that Dr. Pattisapu will be doing the surgery to repair Alex’s VNS implant and wiring that has been attached to her vagus nerve for the past 3 1/2 years. And while this is a fairly simple surgery, it does require a neurosurgeon. Because the vagus nerve is the main communication between the brain and all the vital organs.

Please pray with us that everything goes well with this surgery and the VNS device continues to help Alexandria with her seizures.

Look who visited Alex today!

Pluto provided a good distraction while Alex needed a new IV.

Pluto provided a good distraction while Alex needed a new IV.

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. :)