Z Corley Family in Florida

It’s so good to be in the calm AFTER the storm right now.

VNS implant

Alex is resting comfortably in her hospital bed after a successful surgery and is getting used to the incisions and the brand new VNS device just under the skin near her shoulder/neck.

Dr. Pattisapu

Dr. Pattisapu was very encouraging with Kristi and I after the surgery and explained everything from what the problem was with the VNS implant to what options we can start thinking about for future studies and “brain mapping” to determine if brain surgery will be an option for Alex in weeks and months to come.

But the plan for now is to keep Alexandria at Arnold-Palmer Hospital for one more day to make sure that the new medicine dosages and the new VNS implant are keeping her seizures fairly stable. Then we are hoping to be released from the hospital sometime tomorrow. We can’t wait!

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.

(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 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.

(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.