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.