http://www.corleyz.com/alex/index.php http://www.corleyz.com/alex/interface/feed.png http://www.corleyz.com/alex/index.php Copyright 2008, Andy & Kristi Corley Andy & Kristi Corley en-US SPHPBLOG 0.4.6.1 http://www.corleyz.com/alex/index.php?entry=entry061111-101719 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.]]> http://www.corleyz.com/alex/?entry=entry061111-101719 Andy & Kristi Corley Sat, 11 Nov 2006 18:17:19 GMT http://www.corleyz.com/alex/comments.php?y=06&m=11&entry=entry061111-101719 http://www.corleyz.com/alex/index.php?entry=entry061111-085058 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.]]> http://www.corleyz.com/alex/?entry=entry061111-085058 Andy & Kristi Corley Sat, 11 Nov 2006 16:50:58 GMT http://www.corleyz.com/alex/comments.php?y=06&m=11&entry=entry061111-085058 http://www.corleyz.com/alex/index.php?entry=entry060927-184949 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.]]> http://www.corleyz.com/alex/?entry=entry060927-184949 Andy & Kristi Corley Thu, 28 Sep 2006 01:49:49 GMT http://www.corleyz.com/alex/comments.php?y=06&m=09&entry=entry060927-184949 http://www.corleyz.com/alex/index.php?entry=entry060727-110426
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. :-)]]> http://www.corleyz.com/alex/?entry=entry060727-110426 Andy & Kristi Corley Thu, 27 Jul 2006 18:04:26 GMT http://www.corleyz.com/alex/comments.php?y=06&m=07&entry=entry060727-110426 http://www.corleyz.com/alex/index.php?entry=entry060523-225433
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!]]> http://www.corleyz.com/alex/?entry=entry060523-225433 Andy & Kristi Corley Wed, 24 May 2006 05:54:33 GMT http://www.corleyz.com/alex/comments.php?y=06&m=05&entry=entry060523-225433 http://www.corleyz.com/alex/index.php?entry=entry060521-203215 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!]]> http://www.corleyz.com/alex/?entry=entry060521-203215 Andy & Kristi Corley Mon, 22 May 2006 03:32:15 GMT http://www.corleyz.com/alex/comments.php?y=06&m=05&entry=entry060521-203215 http://www.corleyz.com/alex/index.php?entry=entry060518-230310 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!]]> http://www.corleyz.com/alex/?entry=entry060518-230310 Andy & Kristi Corley Fri, 19 May 2006 06:03:10 GMT http://www.corleyz.com/alex/comments.php?y=06&m=05&entry=entry060518-230310 http://www.corleyz.com/alex/index.php?entry=entry060513-085213
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.]]> http://www.corleyz.com/alex/?entry=entry060513-085213 Andy & Kristi Corley Sat, 13 May 2006 15:52:13 GMT http://www.corleyz.com/alex/comments.php?y=06&m=05&entry=entry060513-085213 http://www.corleyz.com/alex/index.php?entry=entry060511-170654
From Andy:

Kristi told me today that she saw Alex have one seizure last night while asleep. After talking about what might have caused it, Kristi and I both agreed that it was probably because Alex had missed her afternoon medications yesterday.

We'll definitely be watching Alex even more closely now -- and making sure she is right on time with taking her medicines!]]> http://www.corleyz.com/alex/?entry=entry060511-170654 Andy & Kristi Corley Fri, 12 May 2006 00:06:54 GMT http://www.corleyz.com/alex/comments.php?y=06&m=05&entry=entry060511-170654 http://www.corleyz.com/alex/index.php?entry=entry060511-165754 From Andy:

We didn't even think about all the labels on anti-seizure medicine bottles warning patients to stay out of the sun -- until Alex experienced at least four seizures last night!

All we can figure is that a long day at the beach yesterday (even with plenty of SPF40 lotion) worked against Alex's anti-seizure medication and made her more suceptible to these sleeping seizures.

Please pray that this will not start any regular seizure activity. We're still praying that her VNS implant will gradually and totally replace her dependency on anti-seizure medications.]]> http://www.corleyz.com/alex/?entry=entry060511-165754 Andy & Kristi Corley Thu, 11 May 2006 23:57:54 GMT http://www.corleyz.com/alex/comments.php?y=06&m=05&entry=entry060511-165754 http://www.corleyz.com/alex/index.php?entry=entry060408-110147
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!!!!! :) ]]> http://www.corleyz.com/alex/?entry=entry060408-110147 Andy & Kristi Corley Sat, 08 Apr 2006 18:01:47 GMT http://www.corleyz.com/alex/comments.php?y=06&m=04&entry=entry060408-110147 http://www.corleyz.com/alex/index.php?entry=entry060223-191323
Praise the Lord with us that Alex's surgery to implant the Vagus Nerve Stimulator went very well! The device is "on" and functioning properly on the lowest setting (a .5 mA electrical current for 30 seconds every 5 minutes). And the two incisions are taped up good, and we'll be cleaning them three times a day.

Alex (and Kristi and I) continued to covet your prayers as we go through this next 3 weeks to 6 months of the doctors gradually working to get the VNS settings set properly for what Alex needs -- and hopefully taking her gradually, totally off of the anti-seizure medication!

Thanks again for your prayers!

P.S. Alex just now started singing "Our God Is an Awesome God!!!!". What a sweet reminder of her love for God and His hand in her life!!]]> http://www.corleyz.com/alex/?entry=entry060223-191323 Andy & Kristi Corley Fri, 24 Feb 2006 03:13:23 GMT http://www.corleyz.com/alex/comments.php?y=06&m=02&entry=entry060223-191323 http://www.corleyz.com/alex/index.php?entry=entry060223-191200

Alexandria Corley will be going into surgery here at Florida Children's Hospital (in Orlando) anytime now.

We were amazed to hear that Alex's neurosurgeon has been performing the exact same "VNS therapy" surgery on five other children in this hospital just this morning!

We're excited to see God's hand in this procedure, so please pray for:
- our time in the hospital today,
- for all the doctors and nurses who will be involved,
- for a quick recovery, and
- for Alex to transition well with her new implant at home this afternoon a in the days to come!]]> http://www.corleyz.com/alex/?entry=entry060223-191200 Andy & Kristi Corley Fri, 24 Feb 2006 03:12:00 GMT http://www.corleyz.com/alex/comments.php?y=06&m=02&entry=entry060223-191200 http://www.corleyz.com/alex/index.php?entry=entry060215-052509
Alex's surgery is next Thursday, the 23rd, at 10:00am. We are able to have it done here in Orlando and insurance should be covering all expenses! It is an out-patient procedure that should only take an hour and then she will be able to go home that same day. The doc said that she should be able to go back to school on Monday!

She has been doing really good these last few weeks... I am really excited at the possibility of Alex totally being off of her seizure medicine and remaining seizure free... it is hard to wrap my mind around! During the dr. appt, the surgeon was very positive and encouraged that we can predict the majority of her seizures (her sleeping seizures) and that we will be able to closely monitor her to see if those seizures are eliminated. He said that the success rate is now 80% and is more and more favorable in seizure patients.]]> http://www.corleyz.com/alex/?entry=entry060215-052509 Andy & Kristi Corley Wed, 15 Feb 2006 13:25:09 GMT http://www.corleyz.com/alex/comments.php?y=06&m=02&entry=entry060215-052509