VNS appointment today, MRI scan tonight

Just got confirmation that I’ll be taking Alexandria to a neurologist appointment this afternoon, so they can turn off her VNS device in preparation for her MRI later tonight.

The MRI will be a standard 30-minute brain scan, and will allow the doctors to see what has happened since September, when her last MRI showed a spherical-shaped mass in the left hemisphere of her brain.

We are very excited about this MRI especially because:

  1. We’ve felt led by God to pray for supernatural healing over the last month, and …
  2. The recent SPECT scan results showed the doctors almost the opposite of what they were expecting to see …

Thank you for your support and encouragement as our family continues to simply walk the road that God lays out in front of us.
… and we’ll update this site when we hear more! :)

Incredible, inspiring video! (and a quick update & request re: Alexandria)

This is more than just an Easter video. I just previewed this online and was so encouraged and strengthened by the message. I hope it inspires you, too:

HAPPY EASTER!

- Andy

p.s. We are still trying to work out scheduling for Alexandria’s next MRI at Arnold-Palmer Hospital (this seems to be a very busy time right now). Please pray for coordination between our neurologists’ offices, MRI techs, and general scheduling obstacles. And please join us in asking Father to show clear direction from this MRI — either to show indisputable evidence of His healing hand at work, or to indicate that brain surgery is our next step …

p.p.s. Also, as you consider what God is doing — and as He brings Scripture to mind — will you please use the comment box below to share those specific passages with us? Thank you so much!

SPECT Scan on Friday

Arnold Palmer Hospital for ChildrenIt looks like Friday (tomorrow) is going to be another interesting day at the hospital. Alexandria is scheduled for what they call a “SPECT scan“, where the doctors inject a special dye/tracer liquid into her IV just before doing a CT scan of her brain. Then, depending on where the tracer concentrates in her brain, the doctors are able to zoom in on that specific area and see 3-D imaging of what’s happening.

This specialized test will be an out-patient procedure at Arnold-Palmer Hospital for Children, and should only take a couple hours. But we are also looking forward to the great conversations that we normally have in the hospital with Alex’s neurologist and/or neurosurgeon.

Please feel free to pass any part of this message on to others who are praying for Alex. Our family is praying for God’s complete healing … but in the medical world, Friday will be “step 2″ in about four steps of testing that need to be completed before the neurologist and neurosurgeon schedule brain surgery as a cure for Alex’s daily seizures.

Also, especially for those of you in the medical field, here’s a couple pages from Alex’s EEG monitoring last month.

Quick update, more to come …

Nurses call her "Smiley"

Nurses call her "Smiley"

Thanks so much to all of you who have been praying for Alexandria while she was in the hospital! Apart from her I-V taking eight tries!! … everything else went well and we are safe at home resting and recovering. :)

If you think of Alex throughout the day, please pray that she would do well in school … especially in the afternoon. Because her neurologist (wonderful doctor that he is) doubled her afternoon meds in order to combat her daily afternoon/evening seizures. The strategy seems to be working, but the meds cause her to be very groggy and even dizzy sometimes!

Oh, and we now have a really good idea of the next steps that we will be taking to prepare Alex (and all the rest of us) for a possible brain surgery to eliminate Alex’s daily seizures. So keep praying for wisdom with all of that, and I hope to update you with more specifics soon!

- Andy

Happy New Year!

Dr. Ron Davis of Pediatric Neurology, PA

Dr. Ron Davis of Pediatric Neurology, PA

I know, it’s been a long time. So here’s a quick update on what’s going on with Alex.

We talked to Alexandria’s doctors last month and found out that their new, advanced brain-scanning and monitoring equipment had not yet been installed at Arnold-Palmer Hospital. So that’s the main hold-up. But we weren’t too disappointed with that news because it has given us some time to just enjoy the holidays. :)

So for now, we’re just waiting for Alex’s next appointment in a couple weeks to find out what new time-line Dr. Davis and Dr. Pattisapu would like to follow. And in the meantime, Alex will continue taking her anti-seizure medication three times a day — and we pray that the seizures remain mostly under control.

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.

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.

Quick update from Andy

(posted by Andy Corley)

Alex continues to do well with no seizures while she is awake. However, it appears that she is still having at least one seizure pretty much every time she goes to sleep. But we are grateful that we haven’t had to increase the dosage amount for Alex’s anti-seizure medication.

Following doctors orders, Kristi took Alex in yesterday for her first MRI in three years. The films from this test should be very helpful when Alex sees her pediatric neurologist later this month.

We’ll update you more later on the details of this future appointment.