Chase’s Equipment, Braces, Adaptive Toys, etc. NOTE to PARENTS: The purpose of this sheet is to help other parents with an SMA child… It took us a while to get all of Chase’s equipment that he needed, mostly because in the beginning, we were clueless about SMA in general. It is through therapists, doctors, and other parents that we’ve gained our knowledge and want to share it. This is not an end all list but will hopefully help you get started… we are constantly learning and improving on equipment for Chase. Some of the more necessary things are listed in the beginning. There are other types of some of this equipment… this is just what has worked for Chase. Some optional devices and information can be found toward the end, as well as tips and homemade items. If you have any questions about where we got the equipment, when we got it, how we got it, whom we went through, etc., please do not hesitate to contact me. Sherry Langland (mother to Chase, SMA, type I)… EMAIL: SL@LanglandDesign.com
EQUIPMENT	PICTURE	PURPOSE/NOTES, etc.
E-Z-ON Modified Vest_model#M203 (seatbelt system) (size/model is based on weight/measurements of child)		Chase does not do well in a car seat… he has had difficulty breathing when sitting upright at times. When we first got this, our van was not modified for wheelchair access with tie-downs. This vest/seatbelt allowed him to lie in the back seat and be protected during transport. At this time, we do have our van setup with tie downs and ramp, but still use this system if he's sick or traveling long distances. IMPORTANT WARNING ABOUT CAR SEATS… These are very dangerous to our children. I have known and heard of many SMA children who seem to tolerate them, but end up having a situation where the child chokes and/or quits breathing. PLEASE… Do not use a car seat if you have a child with SMA, even if it seems like they tolerate it at the time. Positioning, whether it be during sleep or a car ride, are just as important as the respiratory equipment in keeping our children healthy. Unfortunately a lot of parents don’t realize this till it’s too late.
J. H. Emerson Cough Assist Machine… now owned by Respironics		(RENTED BY INSURANCE THRU APRIA) SMA causes weakness of muscles, including breathing muscles. Therefore, kids with SMA have a hard time coughing. The cough assist helps get up mucus plugs that could otherwise be very harmful. Use of Cardio Physiotherapy (CPT) is also done, prior to coughing to help move things up and out. Suctioning is done afterwards for removal. This machine has saved Chase’s life several times (in helping to remove thick mucus plugs).
Respironics HS456 Inspiration Elite Nebulizer (we use 1 bullet of saline in ours and use prior to respiratory treatments to loosen secretions.)		(RENTED BY INSURANCE THRU APRIA) Used for breathing treatments. Helps loosen secretions prior to respiratory treatments. Different masks can be used to distribute mist. Chase enjoys when his friend “Theodore” helps out by holding his nebulizer mask.
DeVilbiss Suction Machine		(RENTED BY INSURANCE THRU APRIA) Helps remove plugs that are brought up with CPT and Cough Assist. Also a very valuable piece of equipment that has saved Chase many times. It is a good idea to have a backup machine on hand as well, as the battery life seems to only last a few months, when used often. We've had to exchange our out for a new one about 3 times in the last 2 years due to shortening of battery life. It does also come with a plug & car adaptor.
Respironics Bipap S/T with Humidifier and Heating Tray Option AND… Mini Me mask (This is nice because it comes in a very small size and is gel). AND… Nasal Aire II mask (This works better in preventing bipap sores on the bridge of nose, but does not hold in air like the full nose covering mask above, so it is recommended not to use if Chase is sick. Check with your Pulmonary doctor to see what they recommend).		(Machine)… RENTED BY INSURANCE THRU APRIA) After diagnosis, sleep study confirmed weak breathing during sleep (another common SMA trait) and therefore, bipap helps expand his lungs and helps him breathe better during the night, as well as daytime naps. He also wears more often during weak/sick periods.
0xygen (2 portable tanks and cart)		(RENTED BY INSURANCE THRU APRIA) To be used in emergency situations and anytime we cannot get Chase’s oxygen above 89. Oxygen is a temporary solution… any plug causing the need for Oxygen needs to be removed via CPT, cough assist, and suctioning. Oxygen can be hooked up to cough assist mask/tubing (with special connector supplied by your respiratory DME). We have only had the need for this twice, so doing practice runs to help refresh your memory on how to hook up is a great ideal in preparing yourself for an emergency situation.
EnteraLite Feeding Pump		(RENTED to own BY INSURANCE THRU CHILDREN’S HOSPITAL ­ STARSHINE & HOSPICE HOMECARE PROGRAM) Chase requires continuous feeding through the night, as research shows that kids with SMA cannot go without food more than 5-6 hours without muscle protein breakdown. We try not to have more than a 4 hour gap between feedings. Chase gets 3 feedings throughout the day and continuous feeding by night (via feeding pump). It’s important to work with Neurology & Nutrition at CHMC to develop a recipe appropriate for your child. This recipe should include Tolerex or Vivanex (special formulas, based on Amino Acid Diet… specifically for Children with SMA).
TruSignal Ohmeda TruSat Pulse Oximeter		(RENTED BY INSURANCE THRU APRIA) Allows us to monitor Chase’s O2 levels and heart rate. Alarm settings help us respond to emergency situations right away. We use during sleep, car rides, when sick, and occasional daytime checks, and anytime his breathing may seem compromised. Some parents keep this on 24/7. These machines can sometimes act a little goofy, so it’s important to watch the child more than the numbers.
Portable C5 Children’s Fingertip Pulse Oximeter		(Bought this as a backup to the above, but also a portable option) Does same as above, but is tiny, portable, and battery-operated.
PowerBright APS600 Inverter		This is an inverter (a plug in device, which connects to a battery). This can be used with the cough assist, which requires pure sine wave power. We had ours wired to our van battery, so that we can travel with the cough assist and plug in and use at any time during transport. It’s basically like the plugs in your house… any equipment can be plugged in here. It has 2 plug outlets. This is a life saver when traveling!
Marine Battery		This is a backup battery. It can be charged and used for 6 hours between charging. We have this as a backup if the electric goes out. Some folks buy generators for their homes (also a great idea). Originally this did not convert to sign wave power… in other words, it would not work with the cough assist; just other equipment. This can be modified if you know how… My brother-in-law was able to rig it up to allow for the cough assist to be able to be used with it as well (though not for 6 hours, since it does drain more power this way). This battery has 2 plug outlets. We have 2 of these, which we got through insurance.
Kid Kart Xpress w/ Tray Option & Tie-Down Option Also has a base option for sitting inside.		This is a wheelchair that is used for younger disabled children. Many positions are available to help Chase lie back when he has problems being upright. If the tie-down option comes with the chair, it can be used for traveling in the van (with proper tie-downs installed to van floor, etc.). NOTE: Tie-downs MUST be ordered at the time the chair is ordered… this cannot be added later! We like how it looks like a stroller. We like that it’s easy to lift and take apart for transport. And we like that it adjusts to an almost horizontally flat position. We do not like that there’s no room to transport the cough assist, suction machine, and pulse Ox. A couple of other options that might be better because of this is the MAX EASyS wheelchair by Exomotion or the other Kidcart (Kid Kart TLC). Both have an option and space for bottom tray to hold equipment… we did not know this when our Kid Kart was ordered, as Chase was newly diagnosed and we were clueless.
Max EASyS chair/stroller (with Tie-Downs) An inside base can also be ordered for this (but we do not have one).		NOTE: We ended up getting the EasyS Chair when Chase grew too big for his kidcart. (see notes in kid cart section.) It comes in 2 sizes. We absolutely love it. It holds him and all of his equipment. We have tie downs so we can transport him safely in it (in the minivan) and if we need to, we can lay him totally flat (as seen here in the picture. If we had known about this in the beginning, we would have chosen this over the kidcart. It doesn’t have as much in the way of side supports, but makes up for that with all of it’s versatility. We normally keep him somewhat up right while in the van (just at an angle we know he tolerates without problems… please remember every child is different in the amount of upright position that they can tolerate).
Soft TLSO Body Jacket		Trunk brace helps prevent scoliosis (common problem in children with SMA due to lack of ability to sit unsupported). This keeps the child straight when in a sitting position.
Hensinger Neck Collar		Helps to support head when sitting assisted. Chase cannot hold head up for more than a few seconds on his own (typical for SMA, type I). We don’t use this all of the time because we want him to have some exercise in trying to help him gain strength in the neck. It should definitely be used in the car while traveling and other times when the child requires neck support.
DAFO (feet braces)		Helps to prevent or reduce deformities during growth, by helping with the alignment of ankles, feet, and toes. Also helps when in stander to create proper alignment. And helps to give feet a good stretch. There are oversized orthopedic gym shoes made that can be put over top of these. We have a pair, but most of the time, don't use, since they look fairly nice without.
Hand Splints		Chase wears during sleep… hands starting to contract inward and & in a fist (typical with SMA kids). This splints helps provide a stretch while sleeping to prevent further damage or at least slow it down. Using the splints at night also helps to keep his wrists from turning in and causing contractures. We noticed some improvement right away after starting to use these.
Soft Neoprene Wrist Splints & Soft Neoprene Arm/Leg Brace (not pictured)		The above are helping to stretch and keep Chase’s fingers from curling in, but these allow Chase to use his hands and fingers so he can wear sometimes during the day. The main purpose for these is to keep his wrists from turning inward. Since getting the above splints, we rarely use these, but it’s a nice backup and/or additional splint if extra splint time is needed. Chase's arm brace & leg brace in this material (not pictured), which he wears for short periods in the day, helps to keep his extremities straight and prevent further contractures.
Danmar Head Support Bottom Picture: Sprint Aquatic 1/2 pound wrist weights (on ankles) keeps legs & feet down so Chase can be upright in water… helps him walk in water, while building strength. We also have flippers for his feet… great exercise and he loves it!		Keeps Chase’s head afloat in water during aquatic therapy or anytime in deeper water. As Chase got bigger and figured out that he can lean and roll to the side (even with the float on) we bought a floatation belt to use as a stabilizer bar under the Danmar. This keeps him from being able to roll all the way over. There are also Danmar head supports that come with their own stabilizer bar, but this seems to be working well for us:
Superstand Stander with Tray Option (Tray not pictured here)		Allows Chase to be put in a standing position, which puts the pressure needed for his joints and bones to form properly, since he cannot sit or stand on his own. We are working our way up to twice a day 30-50 minutes to help his bones/joints. Every child is different as to what they can tolerate. The great thing about this particular stander is that it can be put in multiple positions, including lying flat. And, if being upright becomes a problem or if a break from being upright is needed, the position can be easily changed. Something they don’t tell you… When our children are in this position, it sometimes causes a bowel movement afterwards. Not sure if this is because of gravity or what, but just be aware. The first time it happened with Chase, it was major and I thought something was wrong with him, but then I learned that it happens to other kids as well.
Leckey Bath Chair & Rolling Shower Trolley attachment		Used to position and keep Chase’s head above water while bathing in the tub (several different positions can be achieved, including height and angle adjustments). As Chase gets heavier, we modified our bathroom and now use the shower trolley attachment shown here with the Leckey to make it easier and safer.
Flamingo Potty Chair with headrest, frame, and wheels		This can be used independently (as it has a bucket under seat that empties). The seat can also be moved from frame and permanently attached to a toilet, if preferred. The advantage of using the frame is the angled seat and wheels for easy transport.
12” Wedge 4” Wedge		Assists with Positioning during some stretches. These come in different angles.
Leckey Corner Sitter with Tray		Chase tolerates this chair but only for smaller periods of time, as it only reclines to 20 degrees. It sits in the floor. I add the 4” wedge (from above) underneath, to give more of an angle and he seems to tolerate this better. We also have a top attachment (headrest) for when he grows taller.
Leckey High-Low Chair (with Tray option)		Doesn’t go all the way back… adjusts between approx. 35 to 90 degrees. Chase does well in it, but sometimes only for shorter periods. This chair can go down to floor level or table level.
Winco Model 857-S Treatment Table		Used for stretching and exercising Chase’s Limbs. Also used as a place to lay Chase during diaper changes (or bed is fine). Upper body support section can be adjusted to upright (like in picture), completely flat, or anywhere in between. We use this as another option for putting Chase somewhat upright to play.
Alvin Reflex Table		This is a flexible table with a wheelchair cutout. The angle and height can be adjusted. It makes a great computer or art desk. We have Chase’s computer on his and we roll him up to it, while in his stander.
Hurts Hospital Bed with rotating Centry Air Mattress		This prevents Chase from getting bed sores. We also put a 2 inch thick memory foam on the mattress. The mattress has the ability to rotate or stay static. You can adjust the firmness and the bed will go in several positions, including up/down/head up/legs up and Trendelenburg, which is great during treatments to allow postural drainage (if your child tolerates). This hospital bed is wood and does not look like the typical medal hospital bed. We love it.
FRS ComLink ST		This is a light/portable communication device. You can program it in many ways. It allows for scanned pictures and can also turn into a Laptop and can also be used to control any inferred TV/radio. This does not take the place of talking; it’s just a tool to assist with communicating and learning. It’s a touch screen, but can also be used with a mouse or other pointer devices. It also comes with an attachable mini keyboard & regular mouse. There are also similar systems that work with eye gaze, if your child has more limited mobility. This device can be attached to power chairs or bedside tables or made portable for easy transfering.
Tilt-Top OverBed Table		OverBed table with adjustable height & tilt. Great for holding communication device and toys, while laying in bed or on massage table.
LapDawg Table... LOVE THIS!!!!		Found this online and it is perfect for Chase because it bends in every direction. As other SMA parents know, it is hard to get a table at the right height & angle for our children, since they lie flat quite a bit. There's a degree number on every bending leg, which you match up to the other side, which makes this table very versatile. And the width is perfect in surrounding Chase's body. It's original purpose is for a laptop, but we use it for that plus to hold toys, books, paper, etc.... tons of stuff. http://www.lapdawg.com/
Card Positioner		Another great item for kids who lay flat alot. This exclusive product from SMA Supply allows cards to stand straight or be viewed at an angle facing down, making it easier for the kids to see the cards. http://www.smasupply.com/exclusives.htm
Respiratory percussion vest http://www.thevest.com/	(Respiratory Percussion Vest)…	This is used in place of CPT. If your child doesn't tolerate percussions with your hand or if you want a different option, this is something that many parents use on their children with SMA to assist in clearing their airway during treatments.
Permobil Power Chair		Powerchairs can be controlled by child with an easy touch joystick or parent can override controls. This kind of powerchair is very popular with other SMA families.
MISC. ADAPTIVE TOYS & COMPUTER OPTIONS THAT CHASE HAS… (great for helping improve play & quality of life)
Adaptive Toys		Toys that have a connection that hooks to an adaptive switch, allowing the child to activate the toy. I know some parents who have adapted their own toys, so I don’t believe it’s too terribly difficult if someone wanted to learn (vs. buying the more expensive already adapted toys).
Microlite Adaptive Switch		Adaptive switches are basically buttons that can be pressed to activate a toy or computer program. They come in different sizes and shapes. The microlite is the smallest and easiest to push. Chase has also started using the bigger rounder buttons at Therapy, which require slightly more strength. He has learned to throw his hand down harder to make them work.
Don Johnston Switch Interface with USB connection		One end of this device hooks into your computer. The other end hooks into an “adaptive switch” (like the microlite switch above)… allowing child to interact on the computer (much easier than the click of a mouse)
Mouse Track Ball		Stationary… only the ball moves (which activates curser). This is not made for the disabled, but Chase does really well with this… his hand fits perfectly over the ball and he can move the mouse around the screen without problems. For kids with less mobility, there are similar trackballs with tiny balls, so a finger would be sufficient to move the cursor. We just got one to try out on Chase's communication device and it seems to work well. The one we purchased is the Kinsington Slim Blade.
Cirque EasyCat with USB connection		Works like a computer mouse on a laptop. Fingers glide to scroll and tap to click. Works with very little effort/touch. This is nice because it’s light and easy to touch, but Chase does better with the trackball, so we really don’t use this one now, but it is a great alternative to the mouse/trackball.
Adaptive Computer Software		“Songs I Sing at Preschool” is his favorite… allows child to pick a song to sing. Music stops and continues with a click (using adaptive switch button or mouse). Teaches cause & effect. ALSO… If you search hard enough, there are some “free” adaptive software programs on the web. Priory Woods School is a good resource for this: http://www.priorywoods.middlesbrough.sch.uk/resources/restop.htm Non-Expensive Software for Toddlers (less than $10 each) (Not Adaptive, but easy to use)… Chase has these and they work great with his track ball. No clicking is necessary to activate selections (just rolling over selections with the curser activates the games). - Reader Rabbit “Playtime for Baby & Toddler” - Mickey Mouse Toddler - Winnie the Pooh Toddler
Computer Games (requires mouse device) - Jump Start - Reader Rabbit		These software programs are not for disabled and therefore you can get them for under $10. They have different kinds… ones for babies, toddlers, preschool, kindergarten, etc. Chase likes the Reader Rabbit for Babies & Toddlers best. There’s a coloring game (it colors as the mouse moves). There’s also a couple of matching games, and much more. There are a lot of other software programs like this out there for $10 or less and you can checkout any place that sells software; they should have them or you can get online.

HOMEMADE ITEMS, IDEAS, & TIPS There’s a lot of things you can make that will improve the quality of play, as well as comfort, when it comes to some equipment. Here are some of the few things we’ve thought of or learned from other parents.
G-tube Cleaning	We clean Chase’s g-tube daily and nurse’s and doctors are always commenting on how clean and clear it looks. Our regimen (which is also used by many other parents) is as follows: clean with Q-tips, soapy water, and plain water. Soak a soft wick (IV sponge) in the following solution: 7ml of water mixed with 1 drop of Tea Tree Oil (can get at local vitamin store). Once saturated, wring out thoroughly and place around the g-tube. Leave on for a few hours or do before nighttime and leave overnight.
Shaving the top off the binky (to fit with the bipap)		Chase always loved his pacifier and we didn’t want the bipap to keep him from having that comfort, so we filed down the top of his binky so that it fits with his bipap on. A lot of the parents believe that the pacifier is good exercise, helping to strengthen tongue and mouth movement, which is why I’ve had a hard time taking it away. Chase is very strong in this area. Even now at 3, Chase still likes his binky while he sleeps.
Created a better Bipap Headgear		We’ve tried many things. The headgear above and the black headgear with holes that comes with the mini-me mask has caused us some problems… makes him sweaty, has caused some pressure sores, and a little bit of hair loss from rubbing. This is the best thing we’ve made so far… it doesn’t cause pressure sores, allows him to be cooler, and his hair is growing back where it was once starting to rub off. I made this with Velcro, elastic, and trach ties. Chase does not have a trach, but insurance still pays for them, since I’m using them for respiratory reasons. Another tip that many parents use with the bipap… makeup pads & Aquaphor in sensitive areas or areas where mask could potentially touch skin and cause breakdown (i.e. as seen on forehead here). We also put a small rectangular strip of soft gauze (we just cut a soft wick/IV sponge in half… same thing) and put Aquaphor on it and lay it under the top of the mask’s nose piece to prevent bipap sore on bridge of nose. This is an excellent preventative measure that has worked well for us.
Tip for a comfortable sleep with no pressure sores:   - Memory Foam   - Positioning Pillows		Memory foam… we bought a twin bed size and cut it down to Chase’s crib size when he was in his crib. Lots of parents use this and swear by it. Positioning pillows help keep Chase on his side during sleep and in a good comfortable position. Positioning pillows are great to use in chairs, etc. to keep them upright or straight. They are very easy to make… just need stuffing and material. Can also use infant positioners that you buy in the store.
Indoor Swing		Since our kids don’t get to run around, it’s necessary to put them in different positions and to let them get some experience swinging and moving. Chase loves swinging so we made him an indoor swing with a parachute hammock hooked to the ceiling. Inside is a boogie board surface with memory foam (made as a bed). You can buy expensive swings for the disabled, but this was under $30 to make. BE SURE to put swing holder in a stud when screwing into ceiling; will not hold weight otherwise. Chase has grown and we now upgrated to a patio swing... you can find these cheaper than a disabled swing, as well. Chase got one for his bday and he loves it.
Bathing (when smaller)		When Chase was smaller and before we got our Leckey bath chair, we liked for Chase to be able to lie in the tub. We used a $3.00 sponge (for infant Baths) and a small rolled towel to keep his head out of water. This allowed him to move and splash a little in the water. Jacuzzis are wonderful too (as long as you keep the temperature between 85-92, don’t use the jets, and check your chemicals before using). Water therapy is the best thing for our kids and Chase always seems to show improvement with movement after being in the water.
PVC Pipe   (Bath Frame)   (Toy Gyms)		You can make just about anything with this stuff. Here’s a bath chair frame that another parent made and below are some toy gyms that we made to allow Chase to swing his hands and/or feet freely, using links and soft headbands to hold his legs and arms, which hang from the pvc pipe structures.
Angled Seat with Velcro & Positioners		I made a pillow-case to fit over the top of our massage table and sewed velcro straps to the cover at each side of Chase’s trunk area and used baby positioners (also with Velcro) to keep him upright. You could do this on any kind of wedge. ALSO… A tray table that people serve food on makes a great little desk to put toys on if you don't have an over bed table. Using non-slip cabinet coverings will help keep toys in place, when angled.
Modification to Corner Sitter		I used the restraints/rolls that came with our Leckey bath chair (since we never needed all of them during his baths). This helps keep him upright and in a straight position.
Making treatments fun…		Chase loves his saline breathing treatments when his bear Theodore gives them! :)
Modified Red Wagon		Chase loves overhead gyms, so we used the heavy duty clamps to hold one of his gyms to his red wagon. We also modified the wagon (added a board to extend the length, as he got a little longer, and we added a tray on the back to hold his suction machine). Covers and memory foam line the wagon, making it more comfortable. There is an organization through FSMA that gives a Red Wagon to newly diagnosed children with SMA.
*** IMPORTANT NOTICE: This is not meant to be used as a definite list of needs for any SMA child, but only as a reference. Every child is different and may not require all of the same equipment/ adaptive needs, etc. It is very important for you to check with your child’s doctors and therapists in regards to what is right for your child. This list is just meant to help other SMA parents, like ourselves, in knowing some of the things that are out there and that may possibly be helpful for your child… but always check with a professional before purchasing or using. Also, there are resources that will help with the cost, or locating used equipment, as some of this can be pricy. Some of these resources are as follows :  Insurance, BCMH, Medicaid, Medicaid Waiver, Family Resource Program, MDA, MRDD, Building Blocks, etc. (Please contact me for a full resource list that I’ve accumulated, including contact Info.). Also, CHMC has patient financial advocates that can help you in knowing what financial resources are out there and how to apply. Contact them right away after diagnosis, as some resources can take a couple of months to get. I have personally worked with: Carrie Keneipp and she is extremely helpful. Her contact info. is as follows: Carrie Keneipp, Family Financial Advocate w/ Patient Financial Services at CHMC:  636-2608 Updated: August 30, 2008