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.

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. :)

Airsick bags not needed :)

(posted by Andy Corley)

Dear friends,

Thank you for praying last week! In an e-mail to everyone, I shared that we were dealing with a nasty flu in our family while getting on planes to fly to Iowa and Colorado. But no airsick bags were necessary. :)

Kristi & the kids enjoyed spending time in Iowa with her family surrounding the passing of her gramma, while I got to stay with two different brothers in Denver & Colorado Springs and celebrate brother Ben & Amanda’s wedding reception with a whole crowd of family.

It was really good to spend time with our families and re-connect in new ways — and our prayers that the flu would not spread any further were answered, too! So thanks for your help to make last weekend enjoyable for everyone!

Andy

Prayer please, and maybe some airsick bags?

(posted by Andy Corley)

Friends, just a quick update for you from the Corleys in Florida …

Good news is that Alexandria’s seizures have been fairly nonexistent lately (ptl!) And her health insurance is now covering 100% of all pediatric neurology visits & meds … and at the most recent visit last week we even found out that her future hand surgeries are very do-able soon & within this insurance network, too! :)

The bad news is that the stomach flu has been passing from person to person through our family this week. We thought we were done with it until Alex started complaining this afternoon.

This is a huge concern because Kristi & all 3 kids will be flying to Iowa tomorrow afternoon to mourn the passing of Kristi’s gramma.

And Andy is scheduled to fly to Denver the next day (Thursday) to celebrate brother Ben & his new bride’s wedding reception.

So we need your prayers please …

… for quick healing and no further spread of the flu
… for safe and uncomplicated travel
… for an emotionally healthy weekend, both in Iowa & in Colorado

Thank you! And may you be blessed with joy and fruitfulness as we enter into the wonderful season of Spring. :)

Andy Corley

Alex’s concern for her best friend

(posted by Kristi Corley)

Alex & EllieThis year has been a bit rough in one area. Alex’s best friend Ellie Skees has been begun a health battle of her own, being diagnosed with Stage-4 Neuroblastoma Cancer. Ellie’s family charts her progress daily in her blog, www.ellieskees.blogspot.com, so please pray for Ellie and her family. Ellie’s mom, Sarah, is one of my very good friends.

We’ve always known that the struggles that Alex has gone through would one day be used for others. Little did we know that already at the age of 7, Alex would be sharing her health experiences — and that it would be with her very best friend.

Alex has been to the hospital a number of times to visit Ellie, and each time has never been scared of the wires, tubes, machines, etc. because they are all too familiar to Alex. Many times Alex would point to Ellie’s IV and say things like, “ya, those things can bother ya, can’t they.” And one day, right as Alex arrived into Ellie’s room, Ellie immediately perked up and said, “Alex!!!! We have the exact same surgery spot!” (pointing to the spot where they placed the port site for Ellie’s chemo, which was the same spot where Alex had her VNS implanted).

One day I received a phone call from Sarah, asking if Alex could come to visit Ellie. Sarah had just explained to Ellie that because of her chemo, that she would be losing her hair. And as you would expect, Ellie was quite upset, and was concerned that people would laugh and make fun of her. Sarah began to compare Ellie to Alex and her health issues, asking if Alex is laughed at or made fun of because of her seizures and also her hand deformity.  Ellie immediately said “NO!! We love Alex and we never make fun of her!” So Sarah explained that her friends would also love her and never make fun of her.Alex's haircut

I explained the whole hair loss to Alex and she immediately came up with some ideas to help Ellie feel better, wanting to go out and buy matching hats, and then came the idea to cut her own hair so that she could give some of her hair to Ellie…

So about 2 weeks ago, Alex had a special hair-cutting appointment and cut off about 7 inches of her hair. And now one of Ellie’s friends is planning on attatching Alex’s hair to a little hat, to have the hair extentions coming out from the bottom of the hat!!! We are very proud of Alex and the compassion she has in her heart.

Having a good summer

(posted by Kristi Corley)

For the most part, Alex has had a pretty good summer.  We took a 3 week trip to visit family.  I was a bit worried as she usually does not do very well on trips.  The beginning of our trip was alittle rough as we all had a bout with the flu, but once that past, she had a great summer.

Upon returning home, Alex had a doctor appointment for an increase to her VNS device.  The doctor asked me if I thought the VNS was working, and I honestly admitted that I didn’t know.  I reminded him how it worked so amazingly well for the first few months and then she just went downhill quickly (in June).

To my surprise and then excitement, the doctor explained that Alex is actually following the pattern of the test patients and that every way that she has responded shows that she is right on track! Apparently, almost all VNS patients show little result after the first few month, but then they have another major breakthrough at about the one-year mark.

So we’re happy with how Alex is doing now, and we’re hoping to see even more improvement in the Spring of 2007 — maybe we’ll even be able to reduce medications more then??? Let’s pray for that. :-)

Seizures winding down?

(posted by Andy Corley)

Just so you know, Kristi and I have been reluctant to make any changes in Alex’s anti-seizure treatment since the increased seizure activity seemed directly related to the day or two that she was without medicine. So we’ve struggled through the seizures while keeping her on the full regiment of anti-seizure medications as well as being very careful to use the VNS implant and activation device as we’ve been instructed.

All that to say that IT MUST BE WORKING!

Yesterday (Monday), Alex did have a number of seizures, but they didn’t start until after 2pm (whereas they had been starting as early as 10am recently). So we had hopes that Alex’s seizure activity was starting to settle down again.

And then today, Alex went all day with NO SEIZURES!
WOW!
Prise the Lord!
… and thank YOU so much for praying!

Pray for health insurance coverage

(posted by Andy Corley)

medical pills

Your prayers are needed. Due to an extra-complicated renewal process this year, it looks like Alex will be without health insurance coverage for at least the month of May.

Please pray that Alex would continue to do well with her VNS implant so we can decrease the dosage of her anti-seizure medication.  Costs that are usually covered by Alex’s health insurance include $300+ per month for medication, and $500 per doctor visit every two weeks.

Thank you for your prayers for wisdom and direction as we tighten the budget and plan for the most cost-effective treatment for Alex.