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.

It's November and we're so happy to report that Alex is doing VERY well! What used to be a daily, heavy burden -- Alex's seizure disorder is now almost forgotten. Now don't get me wrong, we never take lightly the seriousness of her seizure disorder... she receives her medicine 3 times a day, she is due for another EEG check-up before the end of the year, and she needs another check-up on the status of her VNS implant, etc, etc. But we're so thankful for the near elimination of her seizures!!!

We've learned a bit of information lately concerning Alex's VNS device. Over the course of the last nine months, Alex has actually followed the "expected model of progress". If you remember, Alex responded so well after the VNS was implanted, but then after 3 months she took a terrible turn for the worse, having 4-6 seizures a day. Then mid-summer, she gradually began to improve, bringing us to today.

At one of our last doctor appointments, they explained to us that Alex is in a good, expected pattern. The neuro-activity in her brain has gotten used to the VNS implant and that's why she took the turn for the worse. But as other test patients shown, a gradual improvement would and did happen. And ultimately, if she continues to follow the trend, after about 1 year from her surgury (late Feb.) the neurons in her brain will start responding to the VNS even better -- and then year after year it will continue to improve.

Whew!!! That was lengthy, but in a nut-shell, that is the progress that Alex has gone through over the last 9 months. We hope and pray that Alex will contunue to improve and that we will begin to decrease her anti-seizure medicine which causes such terrible side effects on her body.

SEIZURE UPDATE
As far as we can tell, Alexandria has not had even one seizure since about mid-June! What a blessing and stress-reducer! Thank you for your prayers, and we can give all praise and glory to God for the great things He is doing in Alexandria's health.

FINGER-SURGERY UDPATE
Most of you know that Alexandria was born with the middle two fingers on each hand webbed together. After numerous fairly-major surgeries, her fingers now function really well even though the scar tissue pulls them toward each other and causes them to cross over each other.

I was reminded last week that we had mentioned three years ago that Alex would need another hand surgery within five years ...so I asked Kristi what she knew about that timing. She told me that Alex's next hand surgery is tentatively scheduled for when she is ten years old (in about three more years).

Alexandria is truly a blessing as God works daily through her sweet giftings of mercy and compassion.

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! Aparently, 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. :-)

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!

You would have loved to join us at the Liki Tiki village water park this afternoon -- it was so much fun!

There were numerous swimming pools connected to each other with fun water slides, wooden gang-planks and water that was just deep enough to allow the kids to swim from adventure to adventure all on their own. That is, if we didn't have to worry about Alexandria having a seizure!

Kristi and I took turns trying to keep up with Alex and Drew as they ran and swam all over the place -- and with Kaitlyn as she just loved running up and down the "beach" part of the little wave pool. But it wasn't until we'd been there almost two hours that Alex had a full-blown seizure right on the steps of the tallest slide -- and what a blessing that Kristi was right there to catch her from falling.

We have been encouraged that Alex has now taught herself to sit down when she feels a seizure approaching. But the frustrating thing is that she is having regular seizures again while she is awake! It's so discouraging to know that we can't protect her every minute of every day. And with the recent count of about five seizures per day, we just about have to expect one seizure about every two hours. You can imagine how much this limits her activities.

So at this point, I guess we don't really know how to ask you to pray. God is drawing us closer to His heart for encouragement and strength, but even there we don't have any idea of what He is wanting to accomplish through this challenging time.

But we do appreciate your prayers. We feel the effects all the time and know that God is close ...just asking us to press on and trust Him.

- Andy Corley
for Kristi, Alexandria, Drew and Kaitlyn

p.s. You can also read this article on our ministry web site -- and see photos of the afternoon in the photo gallery!

Please pray for Alexandria. Over the past few days she's been having a couple seizures while awake each day and at least one while sleeping.

We praise God that Alex has (for the first time ever) learned how to "feel" a seizure just before it starts -- but it's usually so fast that she doesn't have time to place her magnetic bracelet over the VNS implant to activate a seizure-inhibiting pulse of electricity. So please pray:

• that Kristi and I (Andy) will be able to acquire and regulate Alex's medication today (5/16/2006)
   
• that Alex will learn even more about how her body works and be able to respond to seizures even faster
   
• that the VNS implant would continue to do well -- and even increse in effectiveness to totally replace Alex's anti-seizure medication!

Thank you so much for praying!