Z Corley Family in Florida

(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.

(posted by Kristi Corley)

For those of you that have followed Alex’s blog page, I deeply appologize for the extreme delay in updating you on Alex’s improvements.  It truly is exciting news.  Alex has been doing WONDERFUL since her surgery.  There were no complications with implanting the VNS Therapy device, and the healing process went rather quickly… she was back in school by Monday, just 4 days later!  At her 2 week check up we were pleased to report that she had had only 1 known seizure total!  Can  you believe it, going from daily sleeping seizures and unpredictable spells for days on end with 3-4 awake seizures … to ONE seizure in two weeks! And now, it has been 2 months and still only the one seizure.  WOW!

Alex’s VNS device was turned on at a very low “mini-amperage”, and over the next 2 months, the doctors will slightly increase the level to a normal operating level.  We will continue to visit the doctors office every two week over the next 2 months and begin eliminating her seizure medicine.

We are already seeing remarkable improvements in Alex.  Besides the obvious near elimination of her seizures (yeah!!), Alex is already showing huge improvements in her speed of speech, memory, vocabulary, and performance at school.

Thank you for all of your prayers and concern for Alexandria.  We deeply appreciate you.  If it ever takes 6 weeks to update you on Alex again… gently remind us to get on the ball!!!!!