Lilly’s Team

As many of you know, Lilly has struggled her entire life with cerebral palsy and epileptic seizures as a result of a stroke that occurred during birth due to loss of oxygen.  The seizures began as infantile spasms and progressed in both frequency and severity as Lilly grew.  Various medications have been successful in controlling her seizures, but only for a limited time.  As the seizures increased, so did the number of medicines and volume of medications which greatly inhibited Lilly’s balance, speech, cognition, and overall development.

For the last year we have struggled with the decision of conducting a major brain surgery called a Functional Hemispherectomy.  Although terrified, we were fully aware ofhow invasive this type of surgery is along with the high risks involved and the permanent results thereof.  In the past year we have spent twelve nights in Duke Hospital for observations, sleep studies and EEG tests in an effort to determine the exact location in Lilly’s brain from which the seizures were originating.  We also spent roughly 45 single-day trips for steroid infusions, EEG tests, CT scans, MRI’s, blood tests and various other appointments in preparation for the surgery.  

Along with Lilly’s doctors, we mutually agreed to postpone the surgery until the time it was absolutely necessary. That time came two months ago as Lilly’s seizures became uncontrollable and we exhausted options for other medications and maxed out doses of current medications.

During this time the high doses of medication destroyed Lilly’s balance to the extent that we were in the hospital for three falling incidents within less than a week that resulted in both eyes being bruised and blackened, along with knocking her four front teeth loose and requiring stitches and temporary braces/splints for her front teeth.

Up until the surgery on September 1st, Lilly was having as many as 75 to 100 recorded seizures per day, many of which were very violent.  The overwhelming majority of seizures occurred at night which prevented us from getting any rest as the seizures would not only wake Lilly but also wake us which was exhausting for everyone involved.

The surgery lasted roughly eight hours which involved removing a softball-sized section of Lilly’s skull to allow access to remove the temporal lobe.  The surgery also involved severing the connection between the left and right hemispheres which required cutting along the top center of her head. The surgery also involved severing the connection to the rear portion or her brain, as well as severing the connection below her brain. The skull plate was then returned and numerous permanent titanium plates and screws were inserted to secure the skull plate in place as Lilly healed.  

Although Lilly required a blood transfusion after the surgery, the surgical team felt very confident in the outcome and Lilly’s long-term recovery.  

As of today (Sept. 13th), we are in our third week in Duke Hospital but hope to be transferred by the end of the week, provided Lilly no longer requires a feeding tube and is strong enough for transport.  At that point Lilly will be transported by ambulance to Atrium Health Levine Children’s Hospital in Charlotte for a predicted three weeks of inpatient rehabilitation before being released to return home and start a new life.

We are very thankful for all the support, well-wishes, prayers and kind words from friends, family and others in the community.  

All are invited to the fundraiser on Saturday September 19that Clodbuster Farms, located just outside of Kernersville in the community of Union Cross.  Please see the attached flier for more details.

Also, a special thanks to Zane Sells for hosting this event at his farm along with special thanks to Gina Wear for all her hard work and time spent organizing the event.

 

Sincerely,

The Weavil Family