Yesterday’s SPECT Scan

Kristi and Alexandria, preparing for the SPECT scanFirst of all, I just want to say that God is so good! I’ve uploaded some cell-phone pics so you can see Alex (and Kristi, too) as we sat through the long test there at Arnold-Palmer Hospital for Children yesterday.

The doctors and the hospital were extra busy, so we didn’t get to see any of Alex’s doctors. And while we did not see any overwhelming physical signs of God’s healing of the mass in Alex’s brain or of her fingers, both Kristi and I felt comforted, had peace through the process, and were able to rest in the work that God is clearly doing. We both sensed in our spirits that God was doing something even while the test was being performed — and we’ll know much more next week, after Alex’s neurologist has had a chance to look at the images from this SPECT scan.

Thank you all for praying! … and we wait in expectation, continuing to pray with thanksgiving for the work that God is doing.  :)

- Andy

p.s. Here’s a few more photos of the testing:

Starting the SPECT scan

Starting the SPECT scan

Helping the SPECT scan machine get as close as possible

Helping the SPECT scan machine get as close as possible

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

E.E.G. testing in progress, encouragement from neurologists

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Everything is going good with Alex’s tests here at Arnold Palmer Hospital. Alex doesn’t like all the probes and electrode gel in her hair, but she’s found plenty of TV shows that she likes. :)

Alex’s neurologist Dr. Davis has been by twice to check up on us and explain a few things — and his associate Kay, too. And Alex’s neurosurgeon Dr. Pattisapu‘s partner Dr. Johnson has also stopped by to familiarize herself with Alex and the challenges that we’re considering here.

The best news that we’ve heard so far is that the monitoring is showing that all five of Alex’s seizures last night were originating from the exact same area — right where the pingpong-ball-sized mass is located in her brain.

So the plan is to stay a little longer tomorrow (Wednesday) after the 48-hour EEG and do a fresh MRI of Alex’s brain. Then Dr. Davis will schedule an outpatient “neoro-psych” evaluation, where Alex will be asked all kinds of questions to get a good base-line of what cognitive skills she has right now, to compare with what might be “lost” after surgery.

This is of course very sobering, but it’s good to see all the doctors taking a very measured approach to the surgery option … studying to see what strengths and weaknesses Alex has now (weaknesses including seizures every day) … so we can work toward an outcome that will benefit her most. For example, it would be acceptable for Alex to end up with a few speech issues to work through after surgery if the surgery completely stops the seizures!

So that’s the kind of thing that we’re considering right now as we look forward to the day when Alex will be able to run and play — and even one day drive a car! … without seizures. So we thank you so much for your thoughts and prayers on our behalf!

Hospital pics

Alexandria is such a super-star patient!
I just had to take some cell-phone pics of her time here. :)

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Alex's EEG at Arnold-Palmer Hospital (2/16/2010)

Loving the electric hospital bed

Loving the electric hospital bed & all the settings

Nurses call her "Smiley"

Nurses call her "Smiley"

Cell phone camera wars!

Cell phone camera wars! (she fights back :)

Hmmm ... these pics are a little silly

Hmmm ... these pics are a little silly

EEG monitor ... reading Alex's brainwaves!

EEG monitor ... reading Alex's brainwaves!

One of the more tasty hospital meals

One of the more tasty hospital meals -- she ate it all!

Oh, and she just LOVED the hair-do

Oh, and she just LOVED the hair-do (or would this be a "hair-don't"?)

“Seizure Report”, by Alex Corley

Alex Corley

Here’s a fairly detailed report that Alexandria just finished writing from her perspective, for a school project that was due today. The information is both informative and timely, with some of her history and what’s coming up next too!
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Seizure Report

by Alex Corley

A seizure is a sudden burst of electricity in your brain, very much like a tiny bolt of lightning. This electricity is a signal that causes your body to feel different, or makes your body do things that you can’t control. Sometimes the electrical signal only reaches part of your brain. Then a part of your body, like an arm or a leg, may move on its own. If the signal goes all through your brain, you may shake all over or may fall asleep for a short time. The whole seizure is usually very short—only a few seconds or perhaps a minute or two.

Imagine a room full of mouse traps. Instead of putting cheese in the mouse trap, we put a ping-pong ball on each trap, and there’s not a bit of space in this entire floor where I haven’t put a mouse trap and a ping-pong ball. What if I just throw one ping-pong ball into that room? What’s going to happen? It’s going to hit one, which will bounce, hit two, which will hit four, which will hit eight and before long, the entire room has got ping-pong balls flying in it. That’s a little bit like what happens with a seizure. Irritation in the brain may start at one area of the brain and then spread until it eventually takes over the entire brain.

Doctors aren’t always sure why kids have seizures. Some kids have seizures by hurting their head in a bad accident. Others have an illness that injures their brain. For most kids the doctors cannot find out what causes their seizures.  My seizures started when I was one year old.  The doctors couldn’t figure out what was causing my seizures.  But recently they found a mass in my brain about the size of a ping-pong ball right here (point to my brain).

There are two main types of seizures.  The most common type is called a generalized seizure.  Someone who has generalized seizures may fall and black out.  The muscles will twitch and jerk.  They usually last for several minutes.  People usually feel tired and sleepy when it is over. The second kind of seizure is called a partial or focal seizure.  It involves a small part of the brain and may cause someone to just stop and stare.  My seizures are like the generalized seizures.  I fall to the ground and black out.  It lasts for about a minute, and when I wake up, I feel very tired, and very hungry too!  The doctors don’t know why if feel hungry after my seizures.

The good news is that most seizures can be controlled with medicine.  People can do most activities as anyone else.  For some people, medicine does not work.  These people may decide to have brain surgery.  Doctors can sometimes remove or repair the part of the brain that sends mixed up signals.  In two weeks I am going to the hospital for some tests. They will decide if I am going to have brain surgery to stop my seizures.  The vagus nerve stimulator (VNS) is another type of treatment.  The VNS battery is a little larger than a quarter.  The doctor puts the battery under the skin in the chest.  The battery sends a signal to the brain through the vagus nerve, a nerve in the neck.  The vagus nerve is one of the twelve cranial nerves in the human body; it is like a computer system for the brain.  The signal from the VNS can help stop or prevent seizures.  When I was in the hospital a couple months ago, they replaced my VNS, and it has helped me.

People who take seizure medicines have to take them every day, or even many times a day. Imagine that the medicine is putting the seizures to sleep inside your brain, but they don’t go away. If you forget to take your medicine, the seizures might wake up. Even if you don’t have any seizures for a long time, you still have a seizure disorder, so the seizures probably would wake up again if you stopped taking the medicine.  (show my medicine) This is all of the medicine that I take every day.

Seizures can be very scary. If you wake up after a seizure and everyone around you is worried, you may worry too. But the truth is that kids almost never die from having a seizure. Most seizures last just a few minutes and kids are back to normal after a short rest. Last week I went to Wal-Mart with my mom.  We were trying to find a card for my great-grandmommy for her birthday.  I was looking for a card in a different isle than my mom, and suddenly, I had a seizure and fell to the ground and hit my head.  It made a huge bump.  After I woke up, I heard everyone saying, “Help! Please help!”  A lady called for help and my mommy came around the corner to me.  People were scared and they were calling 911.  I was OK once my mom was with me, and I didn’t have to go to the hospital.  Usually I can feel my seizures coming on, but for the past few days, I haven’t had much of a warning.

Most kids with seizures can ride their bicycles. They just have to be sure that they always wear a bike helmet and stay away from dangerous places.  They can also do lots of other sports. They just need to be a little more careful than other kids. Some people think that kids with seizures shouldn’t go swimming because they might have a seizure in the water and drown. But if you don’t have too many seizures it should be OK for to go swimming in a pool if an adult is watching closely.

I don’t really like having seizures.  But I’m so glad that I have good friends that love me anyway.  I’m glad that God keeps me safe.  I hope one day I won’t have any more seizures.

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! :)