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Jennie Pam's Journey Page Back Story
Jennie Pam is our 6 year old daughter. She has quadriplegic cerebral palsy , microcephelay, hydrocephalous, epilepsy, globally delayed, prematurity of Lungs, and is fed through a Gastronomy tube. She was born premature and suffered a stroke just 8 hours after she was born.
In her short little life she has under gone 8 brain surgeries, 2 eye muscle surgeries and countless hospitalizations. Unfortunately, we are currently nearing her 9th brain operation.
About 15 months ago, in April 11th, 2018, we made the most difficult decision to have our daughter go through a left functional hemipsherectomy. This would disconnect the entire left side of her brain in hopes of stopping the epileptic seizures that were medication resistant.
The surgery was more difficult and strenuous on us and our family then we could ever have imagined, but it was supposed to be worth it to stop the seizures. After a month in the hospital we were able to go home in June of 2018. Just two months later in August of 2018 , Jennie Pam was vomiting uncontrollably and her face had swollen up. It was at this time that we discovered her VP shunt had been failing and caused more brain damage to the remaining tissue in her brain.
After the shunt was fixed we thought we were in the clear of anymore brain surgeries. Unfortunately , in December 2018 Jennie began exhibiting signs of seizure activity. In january , february and March 2019 many doctors and nurses saw the videos of jennie pam behavior and kept insisting that they were not seizures. ( Video shows a brief period at the beginning and then at the 1:00 mark she loses her ability to control her head or trunk )
Thankfully, in April 2019 our nurse practitioner witnessed an episode in her office prompting a 48 hour EEG to be scheduled. In May 2019 an EEG was performed and it was discovered that Jennie Pam was in fact
still continuing to have seizures.
We were absolutely Heart broken. The next step was to get a 3t MRI to evaluate the connections between the left and right hemisphere of her brain. This was done at the End of May 2019 and we waited until June 17th to hear the results. The neurologist and neurosurgeon were stunned. There were three possible connections still in place that could potentially be the cause of her epileptic discharges that were causing her loss of memory, slurred words, loss of gross motor and drooling issues that had surfaced.
The Neurosurgeon said we have two options. There are two connections in her frontal lobe of her brain that can be burned off using laser ablation. the Third connection however cannot be burned with laser ablation. It would have to be removed via an anatomical hemispherectomy where the tissue, that was left in the skull cavity to preserve shape and head spacing , would be removed.
SO our choices are either 1) laser ablation, 7 hour surgery one month at home recovery and 3 month waiting period to see if it worked. or
2) full anatomical hemispherectomy and possible brain tipping but complete disconnection.
Joe and I are opting for the lesser approach first. We are praying this is the answer to our questions of how and why and this can't be happening to us again.
As of right now we are scheduled to meet with the neurosurgeon and have her brain operation scheduled for August 6th, 2019. After meeting with our Surgeon, whom we love, we found out that this is the first case at our hospital where a hemispherectomy was not completely disconnected and it will also be the first time our surgeon is performing an ablation on a post-hemispherectomy patient.
We are overwhelmed by the future that lies ahead of us. We were currently working to get a van that would accommodate an electric wheelchair for jennie pam and also for adapting our house to the new 350 lb piece of equipment.
I can't believe we are here again. Brain surgery AGAIN! i was hoping to start the next phase which is getting my baby girl to walk. She wants to so badly! She is smart and funny and just a ray of sunshine, we would do anything for her. For right now, all we can do is just give it to God, hold onto one another and wait for this nightmare to end.
We truly appreciate everyones help and support. Please feel free to share this page with any family or friends. I will keep everybody posted as things progress as we all hope and pray for a much bigger brighter future for our Jennie Pam.
with all our love,
Candy and Joe