Max's Setup
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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)
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Max's rolling tower, containing all of his medical machines
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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)
- developed in consultation with dietician at children's hospital where Max is followed
- 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)
- 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
- 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
Software
- 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
- current: PRC Accent 1400 (on loan from school system)
- 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
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:
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:
