Max's Setup

Max'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

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Max'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​

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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)

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Max 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)

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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)

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Max 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

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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

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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

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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

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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

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