Z Corley Family in Florida

(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

(posted by Kristi Corley)

This 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.

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.

(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.

(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!

(posted by Andy Corley)

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.