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Beating spinal muscular atrophy (SMA) since 2013
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Max's Setup

PictureMax's rolling tower, containing all of his medical machines
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)
  • Trilogy 100 ventilator (by Philips Respironics)
  • CoughAssist T70 (by Philips Respironics)
  • Massimo Rad8 pulse oximeter
  • EasyGo VAC portable suction
  • Enteralite Infinity feeding pump (by MOOG)
  • Fisher & Paykel MR410 humidifier
  • AMBU bag, emergency trach kit (see below)
  • ..all stored on the rolling vent tower designed for the Trilogy 100

PictureMax's Permobil K450 power wheelchair, "fully loaded"
On the go
  • Power wheelchair: Permobil K450 (Oct '16 - present)
  • Emergency trach kit:
    • ​hanging toiletry kit
    • contents list (to print and attach to outside of bag)
  • 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​

PictureMax 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)

PictureMax in his stander
Orthotics/Assistive
  • 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)
    • SaeboMAS Mini arm
  • 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)

PictureMax 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)

PictureMax playing with orchestra toy, communication board.
Communication
  • Manual communication boards (assorted)
  • Eyegaze hardware
    • Microsoft Surface Pro 4 tablet with Tobii EyeX (pic)
      • Standzout stand
    • 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

PictureMax'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

PictureReal-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

PictureAn 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

PictureMax'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:
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