She had a month and a half of seizure freedom and then at the end of August they returned. She was now having multiple seizures a day, some that were lasting upwards of 30 minutes, so she was re-admitted to Seattle Children's. Brain surgery had been mentioned but was stated as a far fetched option. Days, weeks, months, admittance after admittance, more medications and still the seizures wouldn't stop, there were days that Colbey Raye would have 40+ seizures a day. After many tests, MRIs (now showing more wide spread areas of cortical Dysplasia), EEGs, more hospital visits and stays, discussions with doctors and panels of neurologists, epileptic doctors and many others evaluating Colbey Raye's condition and options, brain surgery was finally agreed upon in November and was scheduled for December 30th.
I spent the day at the hospital with grandma Lori, Auntie Kinsey, Auntie Nini, Papa Tracy, and Colbey Raye's very nervous mom and dad, my brother Josh and my sister-in-law Brittney. We anxiously and nervously sat there and waited for the surgeon to come out and tell us how everything went. The surgeon finally came out that afternoon and said that everything went well and that we could see her soon, thankfully. They had removed the Temporal lobe and parts of the Parietal and Frontal lobes from the left hemisphere in hopes that this would better control her seizures. She recovered quite well and was sent home within a week. She underwent weekly Occupational and Physical therapy to help with the right sided weakness and new visual field cut. She learned to sit on her own, and eventually she began to crawl! She was as happy as could be, smiling, clapping, moving around the house on her own, and was seizure free!!! Everyone thought she was on the upward slope to recovery. Then just 2 short months after surgery the seizures returned. Medications were added, doses went up, and mom and dad watched her like hawks, recording every seizure, their length, the specific time they occurred and their symptoms. The second brain surgery was offered and scheduled for May 22nd and this time they would be performing a function hemispherectomy. The surgeons removed and disconnected the left hemisphere for her brain by cutting down the corpus callosum, in hopes of preventing the seizures from happening anymore as well as preventing any damage to the right hemisphere, since the seizure activity was crossing over to the right hemisphere.
Colbey Raye is now almost two weeks post op and is happy, smiley, giggly, waving and enjoying being home with her big sister, Austyn Jayne, and the rest of the family. She is on a very long, challenging road to recovery but she is right in the middle of it and looking straight forward. This is a marathon, not a sprit for sweet Colbey Raye. She will now battle with permanent vision loss, weakness in both her right arm and leg and will be needing many many hours of Occupational and physical therapy as well as speech/feeding therapy now to get her back to where she was post operation. She can no longer sit or crawl on her own, she can't clap with both hands any more, she needs extra help with feeding, and many other things.
The reason that I am reaching out is because the medical costs, tests, surgeries, medications, therapies, continuous drives to and from Seattle and days of missed work is a heavy financial burden for anyone. Any help that you can provide is GREATLY appreciated. Even if it's buying groceries, diapers or giving a little gas money, it helps immensely!
Thank you you for reading, praying and sending your thoughts in our family's direction!!
if you are interested in Sweet Colbey Raye's progress and the entire story of her journey so far, please look at her mom, Brittney's blog that is both informative and beautifully written. The link is below:
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