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)
Trilogy Ventilator with Fisher & Paykel Humidifier.
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).
Respironics InnoSpire Essence Nebulizer
(used with 0.9% NaCL for daily treatments).
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. Respiratory Percussion Vest (www.thevest.com)
(used daily prior to trach; now PRN).
IPV (Impulsator/ Percussionator/ Ventilator)
(used prior to trach; now PRN - during severe illness) (Picture is prior to trach).
Laerdal Compact Suction (LCSU 4). This is our smallest (most portable) machine. Devilbiss Suction Machine (backup home & travel machine). Precision Easygo Vacuum Suction (backup home & travel machine). Drive Heavy Duty Suction (home machine). 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). 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. Nellcor Covidien PM100N Pulse Oximeter (home unit). Nellcor PM10N Portable Pulse Oximeter (portable backup pulse ox - on wheelchair). Acc U Rate Children's Digital Fingertip Pulse Oximeter (backup for Trach back/ spot checks).
EnteralLite Feeding Pump.
Wrist Splints (used to help keep hand straight when needed) - sometimes used during driving or school activities.
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 (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
MANUAL CHAIR: Invacare Solara 3G
COMPUTER SETUP IN CHAIR
IPAD SETUP IN CHAIR
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.
Besides a ramp going into the house/garage, we have a Foldable Threshold Ramp that is Portable (for unexpected curbs/small steps) - pictured here.
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).
Advance-H Hoyer Lift. Voyager DUO Ceiling Lift. Also pictured in Universal sling with head/back support. 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. Winco Model 857-S Adjustable Head Treatment Table (used as Changing Table). Buffalo Tilt Table (Stander). Columbia Bath Chair (Leckey Size 4 Bath Chair with Rolling Shower Trolley also pictured). Heron Potty Chair. 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. 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). 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 (typically used for hanging toys) - Modularhose clamps work well to hang ipad, book holder, drawing board, slings, etc. Levo Deluxe iPad Floor Stand. Adjustable/Foldable Bed Table (also great for Trach Changes). Tilt-Top Over Bed Nursing Table. Drive Medical Pivot & Tilt Overbed (or Wheelchair) Table. LapDawg Adjustable Table (for Computer, etc.). Portable Polycarbonate Wheelchair Tray (attaches with velcro).
ELECTRONICS and ADAPTIVE DEVICES (including DIY)
ANGEL ARMS (CHAIR VERSION & BED VERSION)
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.
OTHER ARM SLINGS
(CONNECTED TO CEILING LIFT and ACTIVITY OVERHANG):
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. 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 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. Lenova - Yoga 710 (2-in-1) 11.6" Touch Screen Laptop. Used to have a MacBook; switched to be compatible with school. 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. Don Johnston Switch Interface with USB Connection (allows switches to be used for various computer commands (arrows/right click/left click, etc.). Microlight Adaptive Switch (this is the most sensitive/easy-to-press switch we've found). Candy Corn Proximity Switch (no touch necessary - does not work with all switch adapted products). Adapted Wireless Appliance Control - works with any appliance that has a plug and on/off button (i.e. - blender). Tash Mini RELAX Programmable Infra-red Remote Control allows switch controls. Can be used on any remote that is Infra-red (i.e. TV). 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. 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 - 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).