Fund Simon's Robot Ear
Donation protected
This is Simon and his Robot Ear.
A year and a half ago Simon got very sick. He had a subdural empyema, a fancy term for an infection between your brain and skull. One craniotomy, 8 hospital days, and 3 months of 24/7 antibiotics later, he came through with no obvious damage but the scarring.
It was a complete shock when the doctor told us after a routine check that he’d gone completely deaf in his left ear. After we regained composure, the doctor told us about an incredible little device called a bone anchored hearing aid. When you hold his processor, or Robot Ear, as he calls it, against your skull it makes vibrations that your hearing ear can translate into sound. Simon had surgery to get a special post that holds it and takes the vibration straight to the bone for better hearing.
Here’s our problem: Brain surgery and bionic body parts cost a LOT of money. Between my chronic illness and Simon’s Aspergers, we have to spend a lot of time on healthcare and less time working. We’re still over a year away from paying off current hospital bills and they just keep getting bigger. And when it comes time to replace this robot ear, we need at least four thousand dollars for the device upfront. While chipping away at these bills, we can’t save for that expense, and we’re missing out on treatment or enrichment for his ASD, healthcare the grown ups need, and the simple kid stuff like camping, little league and swimming lessons.
We’re reaching out to you, our community, our families, friends, and friends we’ve yet to meet to give whatever you’re able to get us past the debt and back to giving Simon the chance to just be a kid.
The Basics
Here’s what makes up our goal total:
Hospital Bills:2400
Robot Ear Fund: 4000
Expected Expenses: 200
The Breakdown
Here are details of where the money is going and what it’s for. You’ll notice it doesn’t add up to exactly the goal number. This goal number is rounded to a nice neat number for easier tracking and reporting.
The Bills Today
The original hospital stay: 932.66
Follow up with Infectious Disease: 15.82
Follow up with ENT (Ear, Nose, Throat): 15.82
Seeing the Sleep Docs: 25.00
Second stage Implant Surgery: 1361.71
Upcoming Costs
Estimate for Audiology and ENT follow ups (not covered by insurance): 200
Fund for the next “Robot Ear”: 4,000
The Grand Total: 6,576.01
Here’s the plan for the Robot Ear
You wonderful humans create The Robot Ear Fund. We hold that money sacred until the time comes for Simon to upgrade his processor. Then we:
1. Purchase the new Robot Ear!
2. Submit a claim to insurance.
*IF* we’re able to get it reimbursed (not many plans cover these), we:
3. Restock the Robot Ear fund for next time.
Beyond the Goal
In the event that your extreme generosity takes us beyond our original goal, we want you to know what we’ll do with it. No, we’re not going to Disneyland, but we do have a lot of other things we need to do. What we promise is that anything given will go toward Simon’s treatment, management, and enrichment. On the wishlist:
Social Skills classes and camps
Respite Care
Sports camps or leagues
Robot Ear accessories that help in school or sports (mics, loops, streamers)
Word processing tools for school
ASD resources: books, safety tools, curriculum
Reward Details
Let us tell you more about the appreciation tokens we want to give you!
- Card from Simon: An original design by Simon, reprinted and signed.
- Individually colored card from Simon: An original design by Simon, printed in coloring book form, each colored in individually
- Professionally curated mixtape: A mix of songs carefully selected by industry expert Robert Ham
- Handwritten story and picture from Simon: Only TEN available! Writing and drawing is a bit tougher for Simon than most kids, so we’ve limited this reward to an amount he can manage. Let his special brand of Aspie creativity shine in an original story!
- Original Painting by Simon: A limited supply of a personal painting
- Custom Hand-Embroidered Tote Bag: Tell us what you’d like to see embroidered on a tote bag and we’ll try to make it happen. These limited edition bags are each hand embroidered at home, so please allow up to a month for completion.
- Custom curated mixtape: Tell us what floats your musical boat and our resident professional will create a mix of music suited perfectly for you.
- Custom Handmade Wallet: Tell us what you’d like to see embroidered on a wallet and we'll bring it life.These limited edition wallets are each hand sewn and embroidered at home, so please allow up to a month for completion.
About Us
Simon, the star of the show
Eagerly anticipating 2nd grade, Simon loves reading, math homework, and science facts. He’s got a powerful baseball swing, a speedy run, and loves to jump and tumble. Board games and Wii Sports are his rainy day favorites. He also has Aspergers and Profound Unilateral Sensorineural Hearing Loss - the fancy way of saying a deaf left ear.
Lalita, the mom
Lalita works part time in hospital administration and is a total homebody. She loves to embroider, garden, and hug trees. She has a chronic illness that causes constant pain, fatigue, balance problems, and a host of minor twitching, memory, cognitive, and sensation issues. While frustrating and limiting, we work toward getting the most of our family time in spite of the challenges.
Robert, the dad
Robert is a freelance arts journalist, writing reviews, articles, previews, interviews, and more for a wide variety of publications. He is the family’s caretaker and foundation. From daybreak to dinner, he’s assisting with personal care, preparing all the meals, fetching groceries, paying bills, monitoring school issues, shuttling to appointments, managing the environment to meet sensory needs, coaching coping skills, managing whatever Aspie meltdown or health crisis arrives, and trying to get work done in the “downtime.” Post dinner it’s off to work, to meet up for interviews, take in performances, DJ, and write the constant stream of words that all of this is for.
The Kitties
Simon’s constant companions, his much loved kitties. Kitty Classic has accompanied him through every doctor visit, hospital stay, surgery, dressing change, and audiology test. Over the last few years more critters have joined the family, giving Simon an entourage of fuzzy friend.
A year and a half ago Simon got very sick. He had a subdural empyema, a fancy term for an infection between your brain and skull. One craniotomy, 8 hospital days, and 3 months of 24/7 antibiotics later, he came through with no obvious damage but the scarring.
It was a complete shock when the doctor told us after a routine check that he’d gone completely deaf in his left ear. After we regained composure, the doctor told us about an incredible little device called a bone anchored hearing aid. When you hold his processor, or Robot Ear, as he calls it, against your skull it makes vibrations that your hearing ear can translate into sound. Simon had surgery to get a special post that holds it and takes the vibration straight to the bone for better hearing.
Here’s our problem: Brain surgery and bionic body parts cost a LOT of money. Between my chronic illness and Simon’s Aspergers, we have to spend a lot of time on healthcare and less time working. We’re still over a year away from paying off current hospital bills and they just keep getting bigger. And when it comes time to replace this robot ear, we need at least four thousand dollars for the device upfront. While chipping away at these bills, we can’t save for that expense, and we’re missing out on treatment or enrichment for his ASD, healthcare the grown ups need, and the simple kid stuff like camping, little league and swimming lessons.
We’re reaching out to you, our community, our families, friends, and friends we’ve yet to meet to give whatever you’re able to get us past the debt and back to giving Simon the chance to just be a kid.
The Basics
Here’s what makes up our goal total:
Hospital Bills:2400
Robot Ear Fund: 4000
Expected Expenses: 200
The Breakdown
Here are details of where the money is going and what it’s for. You’ll notice it doesn’t add up to exactly the goal number. This goal number is rounded to a nice neat number for easier tracking and reporting.
The Bills Today
The original hospital stay: 932.66
Follow up with Infectious Disease: 15.82
Follow up with ENT (Ear, Nose, Throat): 15.82
Seeing the Sleep Docs: 25.00
Second stage Implant Surgery: 1361.71
Upcoming Costs
Estimate for Audiology and ENT follow ups (not covered by insurance): 200
Fund for the next “Robot Ear”: 4,000
The Grand Total: 6,576.01
Here’s the plan for the Robot Ear
You wonderful humans create The Robot Ear Fund. We hold that money sacred until the time comes for Simon to upgrade his processor. Then we:
1. Purchase the new Robot Ear!
2. Submit a claim to insurance.
*IF* we’re able to get it reimbursed (not many plans cover these), we:
3. Restock the Robot Ear fund for next time.
Beyond the Goal
In the event that your extreme generosity takes us beyond our original goal, we want you to know what we’ll do with it. No, we’re not going to Disneyland, but we do have a lot of other things we need to do. What we promise is that anything given will go toward Simon’s treatment, management, and enrichment. On the wishlist:
Social Skills classes and camps
Respite Care
Sports camps or leagues
Robot Ear accessories that help in school or sports (mics, loops, streamers)
Word processing tools for school
ASD resources: books, safety tools, curriculum
Reward Details
Let us tell you more about the appreciation tokens we want to give you!
- Card from Simon: An original design by Simon, reprinted and signed.
- Individually colored card from Simon: An original design by Simon, printed in coloring book form, each colored in individually
- Professionally curated mixtape: A mix of songs carefully selected by industry expert Robert Ham
- Handwritten story and picture from Simon: Only TEN available! Writing and drawing is a bit tougher for Simon than most kids, so we’ve limited this reward to an amount he can manage. Let his special brand of Aspie creativity shine in an original story!
- Original Painting by Simon: A limited supply of a personal painting
- Custom Hand-Embroidered Tote Bag: Tell us what you’d like to see embroidered on a tote bag and we’ll try to make it happen. These limited edition bags are each hand embroidered at home, so please allow up to a month for completion.
- Custom curated mixtape: Tell us what floats your musical boat and our resident professional will create a mix of music suited perfectly for you.
- Custom Handmade Wallet: Tell us what you’d like to see embroidered on a wallet and we'll bring it life.These limited edition wallets are each hand sewn and embroidered at home, so please allow up to a month for completion.
About Us
Simon, the star of the show
Eagerly anticipating 2nd grade, Simon loves reading, math homework, and science facts. He’s got a powerful baseball swing, a speedy run, and loves to jump and tumble. Board games and Wii Sports are his rainy day favorites. He also has Aspergers and Profound Unilateral Sensorineural Hearing Loss - the fancy way of saying a deaf left ear.
Lalita, the mom
Lalita works part time in hospital administration and is a total homebody. She loves to embroider, garden, and hug trees. She has a chronic illness that causes constant pain, fatigue, balance problems, and a host of minor twitching, memory, cognitive, and sensation issues. While frustrating and limiting, we work toward getting the most of our family time in spite of the challenges.
Robert, the dad
Robert is a freelance arts journalist, writing reviews, articles, previews, interviews, and more for a wide variety of publications. He is the family’s caretaker and foundation. From daybreak to dinner, he’s assisting with personal care, preparing all the meals, fetching groceries, paying bills, monitoring school issues, shuttling to appointments, managing the environment to meet sensory needs, coaching coping skills, managing whatever Aspie meltdown or health crisis arrives, and trying to get work done in the “downtime.” Post dinner it’s off to work, to meet up for interviews, take in performances, DJ, and write the constant stream of words that all of this is for.
The Kitties
Simon’s constant companions, his much loved kitties. Kitty Classic has accompanied him through every doctor visit, hospital stay, surgery, dressing change, and audiology test. Over the last few years more critters have joined the family, giving Simon an entourage of fuzzy friend.
Organizer
Lalita Ham
Organizer
Portland, OR
