Archive for October, 2018

A Month of seizures

Tuesday, October 30th, 2018

NOVEMBER IS EPILEPSY AWARENESS MONTH! Proudly wearing purple the color for Epilepsy. What Malia has been through in the last two months has been almost unbearable to watch. Malia, our little bull, who has struggled with epilepsy since she was six months old has always battled the seizure monster. She’s has had decent control, but recently the seizure monster came back with a vengeance.
In six weeks she has been hospitalized for status epilepticus. ( seizure that will not stop after rescue meds and requires IV drip infusion of drugs). We have watched her suffer up to 200 seizures in one day. We have tried five different drugs. The CBD oil, seems to not be working for her anymore. What we thought was a routine 2 day visit in San Jose two weeks ago ended up being 12 days. We came home Friday, as Malia showed slight improvement with this latest new drug. We tackled the weekend fighting the seizures again and again. Thankfully Roxy was with us in San Jose and a big help during this time.
We are currently searching for the Vagnus Nerve Stimulator Device and hopefully will be able to buy it for her, a mere $15K. Her neurologist here is speaking with a Pediatric Neurosurgeon tomorrow to see if he is willing to do the surgery privately as she is not a candidate for it at the Publicly Funded Children’s Hospital due to the extent of her prognosis.
On a positive note, today she had one of her best days in months, the smile was there and the twinkle was back in her eyes. Little Bull, fights a very tough fight. She has our upmost admiration. She is a true warrior. She has an old soul and not only the tenacity of a bull but an OX.
Our family is stronger because of her. Our faith is strong, and our belief that good will overcome the evil seizure monster. Our will and drive to continue to fight for Malia will never falter. Please continue praying for Malia. She needs all the prayers she can get and to return to the control she had months ago.

Hanging Tough!

3 Little Birds for Malia

Sunday, October 14th, 2018

https://youtu.be/q8h9Ou8B6Tg