Then: In May of 2007 Oli was born with severe bilateral microphthalmia. Her eyes did not develop rendering her totally blind. She was diagnosed with a gene deletion, OTX 2, when she was 2 years old. She is one of only 15 kids in the world known to have this deletion. In March of 2011 she was diagnosed with autism. In October of 2011 she also started having seizures. Oli is now 5 years old. Although she is significantly developmentally delayed and non verbal she has taught me more about myself than I would have ever thought possible. She is a beautiful, sweet, stubborn, curious, brave little girl who illuminates the beauty in everyone she meets. She really is a very special little girl.
Now: Fast forward 11 years and now Oli is 16 years old! Three months ago Oli was visiting her dad in Midland, TX for Thanksgiving break when she got very, very sick. She was diagnosed with a colonic volvulus, an abdominal compartment syndrome and septic shock and they removed 2/3 of her large intestine. They did emergency surgery the night of November 22, 2023 and she was admitted to the the pediatric ICU at Covenant Children’s hospital in Lubbock, TX where she would remain for the following 8 weeks. Finally on January 10, 2024 she was transferred by ambulance back home to Austin, TX to Dell Children’s hospital. She spent the next 5 weeks at Dell. Her small intestine no longer works. The doctors best guess is that the nerves in her abdomen were severely damaged by the abdominal compartment syndrome due to lack of blood flow. She currently is unable to eat anything.
Follow along with Oli as we navigate her new normal and pray for her to heal and be able to eat again. She was able to come home on February 8, 2024 after a total of 78 days in the hospital. I’m a nurse (formerly a pediatric ICU nurse) so they let me take her home even though she is unable to tolerate any kind of feeding. She has a PICC line and is on TPN and lipids for her nutrition.
Prayers, positive energy and good juju is always appreciated for my sweet girl.
I'm fine, but my mommy has issues! 
Really interested in reading more of your blog. Oli sounds incredible and she is lucky to have you!
Check out my blog, documenting my adventures in an Autism classroom and being a nanny for a special little lady!
I am sitting in my car with my sunglasses on trying to control my tears from rolling down my face, after reading your one article. thank you for sharing. It’s been 12 and a half years, it feels a lifetime but also like it was just yesterday, maybe it is a dream and the doctors will say something different. That only lasts for a second. My son has down syndrome.
They only told us just before we left the hospital. I love him but it hurts like a knife that rips through your heart. Unfortunately I don’t run, I took to food, ask no further!
I always try avoid reading up things like this because I know it will hit too deep.
But hearing someone actually say out loud what you almost can’t put into words yourself makes you not feel so alone while pretending you’re fine and stong to the reSt of the world. I’ve got to get it together now I’m seeing someone in 15 min, but it’s proving to be pretty difficult. Thankyou for sharing. X