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.

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.

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! :)