Max's Setup

Max uses a few extra "accessories" to keep him feeling great and ready to take on the world.
Here are some details:

Max's machines (hooked to him, or within reach, all the time)

VOCSN vent/cough assist/suction/oxygen concentrator
Fisher & Paykel HC550 humidifier
Massimo Rad8 pulse oximeter
Enteralite Infinity feeding pump (by MOOG)
AMBU bag, emergency trach kit (see below)
...all stored on the rolling vent tower designed for the VOCSN

Max's rolling tower, containing all of his medical machines

Max's old Trilogy rolling tower setup

Formerly:
- Trilogy 100 ventilator (by Philips Respironics)
- CoughAssist T70 (by Philips Respironics)
- EasyGo VAC portable suction
- Fisher & Paykel MR410 humidifier
- ..all stored on the rolling vent tower designed for the Trilogy 100

Max's Permobil K450 power wheelchair, "fully loaded"

On the go

Power wheelchair: Permobil F3
- Formerly: Permobil K450 (Oct '16 - Oct '21)
Ventilator etc: VOCSN w/humid-vent inline HME for trach humidification
Emergency trach kit:
- hanging toiletry kit
- contents list (to print and attach to outside of bag)
Formerly, for portable humidification
- Fisher & Paykel HC-150 humidifier (can be powered by battery)
- Vagabond Mini (by Paul C. Buff) portable lithium battery (for humidifier)
- Power-out! (by Reliance) power failure alarm
- Temperature alarm

Max tasting pineapple in a Munchkin tasting bag

Diet

does not eat by mouth (but will taste things)
receives feeds via g-tube (Mic-Key button)
blenderized diet using "amino acid" formula (Vivonex Pediatric)
- developed in consultation with dietician at children's hospital where Max is followed
- fruit, vegetables, grain
- walnut oil, salt, multivitamin
- 1200 ml / day
- administered in 200ml boluses, every 4 hours, rate 150ml/hr (120ml/hr asleep)
Blendtec Total Blender Classic (industrial grade blender suited for heavy/daily use)

Max in his stander

Orthotics and Assistive Devices

Daily
- KAFOs (leg/knee splints)
- Hand splints (custom-made, "C" grip)
- Rigo Cheneau brace (National Scoliosis Center)
- Angel Arms
- Universal Exercise Unit ("Max's gym", available online here and elsewhere)
- 2 SaeboMAS Mini arm units (click here for a video in action)
Weekly
- Stander:
  - formerly: Bantam EasyStand
  - currently: R82 Inc Gazelle PS (see right; supports prone standing)
- HeadPod (uses primarily with stander)
Occasional
- Benik hand splints (wrist fixed, for grasping)
- WREX (Wilmington Robotic EXoskeleton)

Max during PT

Therapies

Physical
- 1 PT visit/week PT through county school system
- 2-3 PT visits/week from private PT (mocomc.com)
- additional consults as needed with PT from county school system's assistive technology group (usually for equipment adjustments)
Occupational
- 1 OT visit/week from county school system
- variable frequency OT visits from private OT through mocomc.com
- additional consults as needed with OT from county school system's assistive technology group (usually for communications solutions)
Speech
- 1 SLP visit/week from county school system
- daily oral motor exercises
  - Z-Vibe oral stimulator
- additional consults as needed with SLP from county school system assistive technology group (focusing on communication solutions)

Max playing with orchestra toy, communication board.

Communication

Manual communication boards (assorted)
Eyegaze hardware
- current: PRC Accent 1400 (on loan from school system)
  - DASSY rolling floor stand
  - secondary monitor-based mount
- past: Microsoft Surface Pro 4 tablet with Tobii EyeX (pic)
  - Standzout floor stand
Eyegaze software / languages
- CoughDrop (on the Surface Pro, iPad, and assorted Android tablets)
- NuVoice (on the PRC device)
VocaliD custom voice module
Ablenet Blue2 bluetooth switch
Microlight switches

Software

Reading
- Epic Books
- Amazon Kids / Kindle / read.amazon.com
Music making
- Vochlea Dubler 2 (control music synthesis using voice)
Assistive
- Magnifying Glass (Hover Zoom) Chrome browser extension
Religious
- JITap
Control
- Duet for mirroring Windows PC on iPad (for instructor on-screen interactions)

Max's first trip down his new path

Home renovations

Wheelchair-friendly path from back of house
Removed wall between kitchen and dining room
Take door into "gym" room off hinges and remove entirely for easier entry/exit
Replace bathroom sink with smaller footprint pedestal sink to better accommodate Max's tower of machines
Add a second door into Max's room offering straight-ahead access from the main living space
Reconfigure / replace furniture for a more open layout that better accommodates a power wheelchair driver

Real-time medical stats on-the-go using SmartThings and InitialState

Home automation

Samsung SmartThings, with Amazon Alexa voice control
Lights, music, fans, other devices/toys
Medical machine power monitoring (as a surrogate for activity)
Hospital-style medical heartrate and SPO2 monitoring using Massimo Rad8, Onion Omega, and Grafana
Initial State for remote visualization of state
Z-wave in-bed presence detector

For more info on home automation, check out facebook.com/groups/SmartHomesForSpecialNeeds

An adapted swingset

Adaptability

Adapted swingset (hooked to Max's Zippie Voyage stroller seat)
For our Ocean City vacation: the "dune buggy" (Dune Buggy 2.0)
More ideas:
- Toy ideas for kids with spinal muscular atrophy, type 1
- Useful items for kids with spinal muscular atrophy, type 1

For more Adaptability tips and tricks, join facebook.com/groups/SMAadaptability

Max's BEAM

Assorted Tech

Telepresence robot: BEAM (Suitable Technologies), Double, and homeschooling telepresence setup (latest updates!)
Wireless remote power outlet (for stationary suction remote)
Microlight switches

This video shows how we've set up our home to facilitate Max's daily activities: