Upcoming “fMRI with grid” testing

Both of Alex’s appointments last week went very well. One was with the neurosurgeon Dr. Pattisapu, and the other was with her pediatric neurologist Dr. Davis. And both specialists are very confident that the best thing for Alex is to move forward with the more invasive testing in a couple months.

So right now we are preparing Alex for that time by changing Alex’s medicines & dosages around to better control her seizures. And so far, the changes seem to be working.

Then, in about a month we will meet again with Dr. Davis to begin planning for the procedure that they are calling an “fMRI with grid” … meaning “functional MRI” (an MRI to watch for specific patterns related to motor function), while applying a “grid” of sensors directly on the surface of her brain.

And that testing will give MUCH more detail and accuracy as to exactly what is happening with Alex’s seizures … and whether the mass that they found in her brain is causing the seizures and/or if it can be surgically removed.

Scary stuff when you start talking about brain surgery on a 10-year-old daughter! But it is in God’s hands, and Kristi and I are both resting in the understanding that SO MANY things have come together supernaturally to get us to this decision point right now.

And we know that all the doors are wide open right now for us to simply walk through … of course with many, many prayers for Alex’s safety and specialized care.

Doctor visit today

Alexandria, in her class at school

Alexandria, in her class at school

Well, it’s quite a bit more than just a “doctor visit,” but you can’t really title a blog entry “Pediatric neurosurgeon visit today.” :)  So anyway, that’s what’s going on today. Alexandria will miss some school in favor of a very important and exciting appointment with Dr. Pattisipu!

It’s crazy to think that it’s already been two weeks since Alex was released from the hospital. But her incisions are completely healed, so that makes sense.

Overall, Alex is doing very well. Although she does still has a seizure or two each day (and more at night), she has adjusted well to both the new VNS implant and the higher dosage of anti-seizure medication. We’re still working with Alex to encourage up to twelve hours of sleep each night — an important factor in how many seizures she’ll have in the day-time — but at least the seizures are fairly manageable right now.

Another relief for us is that we’ve received full confirmation that Alex’s continuing visits with the best pediatric neurologist and pediatric neurosurgeon, although outside her insurance coverage network, are going to be covered 100% by her health insurance! This is not only a relief when thinking of Alex’s last hospital stay that probably tallied more than $100,000 — but it also allows us to move forward with regular visits starting this week!

After Alex’s visit with Dr. Pattisipu today, she has an appointment tomorrow with Dr. Davis, her pediatric neurologist. And from those two appointments, we hope to have a better idea of when future scans and brain-mapping procedures will be scheduled.

My hope is that through the new studies that Dr. Davis and Dr. Pattisipu are about to initiate, we can not only find a cure for Alexandria’s seizures, but also be an encouragement and help to many other families of children who suffer from similar seizure activity.

First full day home from the hospital

Yesterday was our first full day with Alexandria home from the hospital. So we got to rest and watch some college football and let Alex just take it easy.

Drew at Don Pablos Mexican restaurant

Drew at Don Pablo's Mexican restaurant ... HAPPY BIRTHDAY Drew!

But it was also Drew’s 9th birthday, so that made for a super-eventful day for us guys! Drew invited his best friend Corey for a sleep-over the night before, then we all got up and went for an exciting time at the go-cart tracks … what a blast! (especially the “fast track” : )

And then we had a family birthday supper for Drew at his favorite Mexican restaurant (which happens to be one of Kristi’s favorites too!)

So overall, it was a very good first full day out of the hospital. Alex did have a few awake seizures during the day with Kristi, but she seems to be healing well from the surgery and moving toward a full recovery.

Surgery Update

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

VNS implant

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

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! :)

VNS Surgery Today

Alex & Kristi, just before Alex went in for surgery

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.

Look who visited Alex today!

Pluto provided a good distraction while Alex needed a new IV.

Pluto provided a good distraction while Alex needed a new IV.

Thoughts from a father

(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 all three kids on their first day of school -- and Drew's shirt says it all! :)

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.

Alex’s concern for her best friend

(posted by Kristi Corley)

Alex & EllieThis 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.Alex's haircut

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.

Having a good summer

(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. :-)

Seizures winding down?

(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!