Introduction
Our baby, River, was born at term with HIE, hypoxic ischemic encephalosomething, and has a surgically implanted gastronomy tube. We have a teal Moog infinity pump, the orange one is for breast milk, our baby is on 100% formula.
We hope this information will be useful to other parents.
Please contact dakotah@sylveon.org with any questions, feedback, or whathaveyou.
A little about River’s parents
We wanted to have a homebirth in the bathtub but decided a hospital would be safer. We are pretty sure our child’s traumatic birth was a result of hospital negligence. In any event, the experience brought us closer together as a couple and we are excited to move forward with our beautiful baby.
We were, of course, hesitant to have any surgery done to our baby, but the gastronomy tube has honestly been a great thing. It is so easy to feed our baby and ensure she gets the proper calories. She is never really fussy or hungry, even in the morning after 5 hours without food. We are working with several speech therapists to get her to eat, and plan to introduce purees as soon as possible, but it is definitively a low priority. If she has to wear her cyborg backpack to feed herself forever, we are okay with that, and would rather focus on cognitive development as a top priority.
We intend to homeschool, and will more than likely be following the contemporary “Unschooling” approach. We have a goal to raise $700,000 to invest in her by her 16th birthday, which is $300,000 of 2005 money adjusted for 2039 inflation estimates, the amount Scott Swift invested in his daughter, Taylor, at that age. Being a recreational rocket-ship race pilot & president of the USA is our suggestion to our daughter so that she will have the network and funding to do whatever she wants in life in her 40s and beyond, we hope she can count on your vote in the election of 2060.
We both practice a spiritual form of stoic absurdism; nothing matters and even if it did, it wouldn’t make any sense.
“Everybody’s got their problems;
Everybody says the same things to you;
It’s just a matter how you solve them;
And knowing how to change the things you’ve been through.”
-Sum 41