Feb 21, 2019 Latest post:
Feb 26, 2019
Meet Cami! The most sassy, high spirited, loving, caring, awesome little sister, amazing daughter and bossy DIVA of them all!! She is a rock star and I only hope to be as cool as she is one day!
Cami has 4 older siblings. Her bother, Casen, who she calls buddy bear is 12. Her sisters, Ryli(panda bear) is 9, Remi(Gummie bear) is 9 and Emma(koala bear) is 6. She calls dad, Steve, Papa bear and mom, Denika, Mommy bear, and of course Cami is called baby bear. Her family are her number one fans and she has us all(especially her siblings) wrapped around her little finger.
Cami will be having her radical brain surgery (peri-Insular Hemispherotomy) on Tuesday, 2/19/19.
Welcome to Cami's, our Epilepsy Warrior on her journey to seizure freedom, CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Cami’s story-: Cami was born 8 weeks early and had a grade 3 brain bleed. grade 4 is the worst. That brain bleed damaged almost all of her left brain. When it killed the brain tissue, it just filled up with fluid on her brain. The pressure pushed some fluid over to her right side. We thought for the past 4 1/2 years that she also had brain damage on her right side but Mayo Clinic told us that it was pry just the pressure moving the fluid over and that her right brain is normal! That was a relief to hear. Well the fluid build up and pressure led to her diagnosis of hydrocephalus and PVL-periventricular leukomalacia(brain damage). A shunt was put in at the children’s hospital Colorado in Denver, CO at 8 months old. That was so terrifying when they took my sweet baby away for brain surgery. I wanted to grab her and run out the door. The shunt did its job and is draining her fluid correctly so it doesn't build up and cause pressure on her brain. She was diagnosed with cerebral palsy at just under a year old. I already knew it and when we went in for her year check up a couple weeks early, I asked the doctor and he said they like to wait till a year to diagnose but I was mentally prepared to hear the words and we all knew she had CP and so I asked him to just do it that day and he did. After the shunt was placed, everything calmed down. She had her delays but she was in occupational therapy, physical therapy and speech/language therapy each twice a week from birth-3 years old. She then entered early intervention preschool with the school district where she gets PT and SLP. We have continued outpatient OT that we take her to weekly. Her CP affects her right side. Her leg is pretty good other than it being shorter but it really affects her right arm and mainly her hand. She has an AFO leg brace that she wears on her right leg. We have splints and wraps that we use to help her gain strength in her right hand/arm and to help make it easier to use as a helper hand. Her hand and foot doctors are at the Shriner's hospital in Minneapolis. She does everything with her left hand but there are several tasks that obviously are easier with both hands. She was doing really well with using her right hand as a helper and then her seizures started and she went totally backwards. Since then, we have started Botox injections every 3 months in her right hand and arm in Sioux Falls and that has helped a little. So we went 3 1/2 years without seizures but as her brain tried to use more parts of the the damaged area the pathways weren't there and so that's why they started. Her first seizure was a full blown grand mail seizure on 10/20/17 and it lasted more than an hour. The ambulance and ER couldn't get it to stop. After pumping her full of meds, it finally stopped. She was admitted to the PICU and was pretty much lifeless for 24 hours. The meds totally knocked her out. Even when we lifted her eyelids, her eyes were gone. I was terrified of what was to come! Thankfully after she rested, she started to wake up more and more. She started to interact with us more and more and even asked for my phone and food. Lol. I knew she was back! They were afraid to feed her and so they brought her toast and she demolished it and another 2 pieces. We spent 3 days there and a day on the regular Peds floor. The neurologist in rapid started her on a very low dose of keppra and had an EEG done. The day after her seizure, I made an appointment in Denver for her since her neurosurgeon was there. In the meantime, I met with the rapid neurologist and he told me that her eeg was normal and she probably wouldn't ever have another seizure. We went to Denver the next week on 11/2/17 and had another EEG done. Her doctor reviewed the rapid one and they both showed the same exact thing! Her left brain waves were totally out of whack and she was diagnosed with Epilepsy and they doubled her dose. She said cami has has Focal complex partial epilepsy intractable with status epilepticus. She said she was 70% or higher chance of having more seizures. Since then, she has seized every 1-3 months. We have increased meds and added meds but her seizures aren't being controlled. Every time she seizes they last 20-60 minutes and she requires 2-3 high doses of rescue meds to get them to stop. Those totally knock her out every time as well. In Denver she was also referred to a specialist, an epileptologist. We did an EMU (epilepsy monitoring unit) stay in Denver on 11/12/18-11/19/18. They weaned and stopped her meds in hopes to catch a seizure to Determine where in her brain they were starting. They want to try and do a partial left hemispherectomy versus an entire left side but she never had her typical seizure. Only 3 night ones that lasted 30 seconds-3 minutes but stopped on their own. So based on just her EEG results, they recommend to do an entire left hemispherectomy. It's a very rare procedure. This the only chance she has for seizure freedom. Plus 1 in 1000 people with epilepsy die from it and she falls into 1 of the top 3 categories of the main causes of death caused by epilepsy. When she goes into adolescence, she would then be in 2 of the top 3 causes. So I had to get a second opinion and that's why we went to the Mayo Clinic in Rochester, MN from 12/5/18-12/18/18. We did the EMU stay there for 12 days there and she still didn't seize there either. We met with the surgery team in Denver on 2/4 and the surgery team at Mayo on 2/6 and now we needed to decide where to have her surgery. Denver wanted to do a functional hemispherectomy Where they remove the whole temporal lobe to get easier access to the amygdala, hippocampus and insula and disconnect the two hemispheres. Mayo wants to do a Peri-insular Hemispherotomy where they only make small holes in the temporal lobe and then only remove small parts of the temporal lobe to get access to the amygdala, hippocampus and insula and then disconnect the left hemisphere from right hemisphere. We have decided to proceed with MAYO.