CHASE'S EQUIPMENT, SPLINTS & ADAPTIVE DEVICES


It took us a while to get all of Chase's equipment that he needed, mostly because in the beginning of his diagnosis, we were clueless about SMA in general. It is through therapists, doctors, and other parents that we've gained our knowledge throughout the years and want to share our experience. This is not an end all list and does not include supplies. The equipment and splints have changed with age, based on need, but this will hopefully help give an idea of some of the things children with SMA use. We are constantly learning and improving on equipment for Chase. If you have any questions about Chase or his equipment, please do not hesitate to contact me.

Sherry Langland (mom to Chase, SMA type 1)
Email: SL@LanglandDesign.com


 

RESPIRATORY EQUIPMENT

vent and heater

Trilogy Ventilator with Fisher & Paykel Humidifier.

cough assist

cough assist

 

Respironics Cough Assist:

1) NEWER PORTABLE VERSION (has internal & external battery). Battery is compatible with Trilogy Vent. This stays on Chase's wheelchair and used when we travel.

2) NON-PORTABLE VERSION (Plug-in ONLY). To use this one in travel, must have Pure Sine Wave Inverter and marine battery. (This is what we did prior to getting the portable battery-operated version).

neb

Respironics InnoSpire Essence Nebulizer

(used with 0.9% NaCL for daily treatments).

cool mist
Precision EasyAir Cool Mist Compressor (This is used for humidification if Chase's trach becomes dry and needs extra moisture; however, he prefers an extra neb over this, so we don't use very often). Unlike the nebulizer, this uses distilled water.
vest
Respiratory Percussion Vest (www.thevest.com)
(used daily prior to trach; now PRN).
IPV
IPV (Impulsator/ Percussionator/ Ventilator)
(used prior to trach; now PRN - during severe illness) (Picture is prior to trach).
suction
Laerdal Compact Suction (LCSU 4). This is our smallest (most portable) machine.
suction
Devilbiss Suction Machine (backup home & travel machine).
suction
Precision Easygo Vacuum Suction (backup home & travel machine).
suction
Drive Heavy Duty Suction (home machine).
suction
Mannequin Res-Q-vac (PT#AP2014) Manual Suction (for ER suction when traveling during electric failure) (small/portable/fits on wheelchair - comes with rigid catheter pictured, but smaller/flexible catheters are available).
oxygen
Allied Lif-O-Gen Portable ER Oxygen (this is for ER only with limited supply of oxygen) - Easy to transport on wheelchair (fits in a wine bag). We also have larger units at home.
SpO2
Nellcor Covidien PM100N Pulse Oximeter (home unit).
SpO2
Nellcor PM10N Portable Pulse Oximeter (portable backup pulse ox - on wheelchair).
SpO2
Acc U Rate Children's Digital Fingertip Pulse Oximeter (backup for Trach back/ spot checks).

ENTERAL EQUIPMENT

Feeding Pump
EnteralLite Feeding Pump.

SPLINTS

wrist splints
Wrist Splints (used to help keep hand straight when needed) - sometimes used during driving or school activities.

splints

moist heat pads

Arm/Hand Splints (used at night to keep arm/hand from contracting).

Leg/Foot Splints (used at night in the past unit it became difficult to turn Chase properly with these on, due to growth).

Moist Heating pads (warmed in microwave--pictured here--used with stretching, prior to applying splints).

DAFOs

DAFOs (wears most of the day to help prevent drop foot and keep feet aligned).

WHEELCHAIR/ SETUP (for Travel, Computer, and iPad use)

POWER CHAIR: Zippie ZM310

powerchair setup

MANUAL CHAIR: Invacare Solara 3G

manual wheelchair setup

COMPUTER SETUP IN CHAIR

computer setup in chair

IPAD SETUP IN CHAIR

ipad setup in chair

 

TRAVEL

inverter

PowerBright APS600 PureSine Wave Inverter. Ours is wired through our vehicle's battery, so that we can plug any of Chase's equipment in, while driving.

step ramp

Besides a ramp going into the house/garage, we have a Foldable Threshold Ramp that is Portable (for unexpected curbs/small steps) - pictured here.

SUV
Handicap Accessible Vehicle (use to have a converted minivan; now have converted SUV). Many folks have a bigger conversion van (if child needs to lay flat/needs more space).

TRANSFERS/HOME/SAFETY

hoyer
Advance-H Hoyer Lift.
ceiling lift
Voyager DUO Ceiling Lift. Also pictured in Universal sling with head/back support.
bed
Hurtz Hospital Bed with Rotating Centry Air Mattress (also pictured - homemade Wood Risers made by Chase's Uncle to accommodate tall caregivers). Bed goes up/down/trendelenburg/reverse trendelenburg.
treatment table
Winco Model 857-S Adjustable Head Treatment Table (used as Changing Table).
stander
Buffalo Tilt Table (Stander).
bath chair
Columbia Bath Chair (Leckey Size 4 Bath Chair with Rolling Shower Trolley also pictured).
potty chair
Heron Potty Chair.
generator
Honda EU2000 Inverter (Generator) - used at home when electric goes out. Looking at getting a full house generator, but this is a good cheaper backup for just running necessary respiratory equipment.
monitor
Infant Optics DXR - Baby Monitor & 2 Cameras (Clip-On Cup Holder works great at keeping adjustable rotating cameras angled at face & vent through the night).
elevator
Savaria Home Elevator/Lift. This helps Chase get from his upstairs bedroom to downstairs/exit, in his wheelchair.
Chase's wheelchair/equipment is starting to outgrow this, so we are now looking at adding a new room for him on our first floor... will post pics once completed.

TABLES and DEVICE HOLDERS

activity overhang
Activity Overhang (typically used for hanging toys) - Modularhose clamps work well to hang ipad, book holder, drawing board, slings, etc.
ipad floor stand
Levo Deluxe iPad Floor Stand.
bed table
Adjustable/Foldable Bed Table (also great for Trach Changes).
overbed nursing table
Tilt-Top Over Bed Nursing Table.
wheelchair table
Drive Medical Pivot & Tilt Overbed (or Wheelchair) Table.
lapdawg table
LapDawg Adjustable Table (for Computer, etc.).
wheelchair tray
Portable Polycarbonate Wheelchair Tray (attaches with velcro).

ELECTRONICS and ADAPTIVE DEVICES (including DIY)

ANGEL ARMS (CHAIR VERSION & BED VERSION)

angel arms

Angel Arm Slings (Mobile Unit for Wheelchair and Bed Unit both pictured). These are made by another mom with a child with SMA and we love them. Chase uses the mobile one at school everyday.
(http://www.jaceysjourney.com/-arms-for-angels-.html)

 

OTHER ARM SLINGS
(CONNECTED TO CEILING LIFT and ACTIVITY OVERHANG):

arm slings

Slings/Cuffs - we've tried various ways to hang Chase's arms. Using medical grade rubber bands, exercise bands, or small bungee's with wrist cuffs (or ankle cuffs) can help remove gravity and allow more movement to reach/activate toys & electronics. Do not use regular rubber bands, as they can snap/break. Currently we hang Chase's arm from the ceiling lift with an exercise band, as we've found the farther he hangs down, the more bounce/accessibility he has.

 

MODULAR HOSE (WITH VARIOUS CONNECTORS):

modular hose

Modular Hose. This comes with various attachments. You can also shorten or lengthen the arm (which is made up of small pieces that snap together, making it bendable, yet sturdy. You can change the ends, but it can be difficult, so we have several arms with various attachments that we leave on. We've used these to hold the ipad, books, instruments, art canvas, video game controllers, wheelchair fan, a laser tag gun, and more). We love it! (www.modularhose.com).

 

ipad
iPad Mini with TouchChat HD (communication software). Chase talks, but has this as a backup option. Also uses it for games & school apps. We prefer the Mini over the full-size iPad, since Chase is not able to reach all corners of the larger iPad.
touch screen computer
Lenova - Yoga 710 (2-in-1) 11.6" Touch Screen Laptop. Used to have a MacBook; switched to be compatible with school.
slimblade mouse
Slimblade Trackball Mouse. We have tried many trackpads and trackball mice. We've had some luck with a few. This is Chase's favorite. Cirque EasyCat & Apple's Magic Trackpad also work well. We would prefer this slimblade trackball size mouse with a smaller surface, but haven't found anything like that yet.
switch interface
Don Johnston Switch Interface with USB Connection (allows switches to be used for various computer commands (arrows/right click/left click, etc.).
adapted switch
Microlight Adaptive Switch (this is the most sensitive/easy-to-press switch we've found).
candy corn proximity switch
Candy Corn Proximity Switch (no touch necessary - does not work with all switch adapted products).
appliance switch
Adapted Wireless Appliance Control - works with any appliance that has a plug and on/off button (i.e. - blender).
accessible remote
Tash Mini RELAX Programmable Infra-red Remote Control allows switch controls. Can be used on any remote that is Infra-red (i.e. TV).
aquatic float - danmar
Danmar Head Supports. Both before and after Trach floats are pictured. "After Trach Float" was special made with the help of May-We-Help-Engineers working with Danmar and aquatic therapist. This allows Chase the freedom of the water without exposing his trach to water.
gaming
Adaptive Video Gaming System. This is an awesome system that allows Chase to play his PS3 and wii games using adaptive switches. This was a part of Chase's Make-a-Wish. He loves it! Modularhose arms used to hold controllers.
(gaming devices can be found at: www.broadenedhorizons.com).
marker holder
Marker Holder - This is something I made with a couple of pieces of elastic sewn together. I added 2 loops (one size loop to fit Crayola Pip-squeak markers, and one size loop to fit Crayola slick stix--which are easy to use/light pressure crayons--highly recommend). Since Chase doesn't have a strong grip, this allows him to hold the crayon/marker and draw (with hand in sling system).
 
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