All of the information on this page was written by my mommy, Michelle.

 

 Cough Assist Machine

With SMA, all soft muscles are weakened, including the lungs.  Malorie’s cough is very weak, and ineffective – she has insufficient ability to clear museous and secretions – so that’s where the cough assist machine comes in.  With a mask that covers her mouth and nose, and mechanical pressures of 40/40, it forces air into her lungs, and then sucks the air back out – creating a cough.  This is, without doubt, the most important of Malorie’s machines – she wouldn’t be here today with out!  When Malorie is sick, we use this machine as much as needed – even as often as every 2 minutes – until her airways are clear.  Now that Malorie is older, she is able to cooperate with the machine – she knows that it helps her and makes her feel better – she even asks to be coughed now – and holds the mask to her face all by herself!  It is also a means of chest expansion – so we often use it when she’s not sick too – to keep her chest expanding and growing. www.coughassist.com

 Suction Machine

The suction machine goes along with the cough machine.  What the cough machine brings up, the suction machine brings out.  It’s also very effective as a daily method for “blowing her nose” – since she doesn’t have the strength for that exercise either.  Malorie has a stationary unit (Erie Medical Super Vac), as well as a portable unit (DevilBiss).

 

    

Pulse Oximeter

Malorie wears the pulse oximeter when she sleeps and whenever she is sick.  It continuously monitors her blood oxygen saturation levels and her heart rate.  When she’s awake, and healthy, her O2 levels are generally around 98-100%.  And, as long as she’s above 94% when she is sick – we’re doing well.  If she were to go below 94%, that would mean that she needs to clear her airways (i.e. cough/suction).  Another benefit of monitoring her vitals each night is that we can see when she’s starting to get sick – her heart rate starts to increase.  Finding out about impending sicknesses is imperative – we can start the antibiotics and dive right into our “sick protocol”.  Malorie uses the Nellcor 290.

 

BiPAP & Humidifier

This machine gives Malorie a deeper breath of air with every breath she takes on her own. BiPAP stands for bi-level positive air pressure.  The machine has a backup rate, so when Malorie is on it, she gets a certain amount of breaths per minute – even if the machine has to initiate those breaths for her. Malorie uses her BiPAP for all sleep and even more during periods of sickness. While the BiPAP is at work, we know that Malorie’s lung muscles are being exercised - and that she is also being given a rest – enabling her to breathe more efficiently on her own when she is off the machine.  It also gives Malorie more energy because she does not have to work so hard while sleeping.  Malorie uses a Sullivan VPAP III ST – the mask is the Fisher Paykel Petite Mask (#406).

     

Nebulizer

Malorie uses the nebulizer when she’s sick.  She takes Pulmicort, Pulmozyme, and Xopenex treatments with the nebulizer – they open her lungs and thin secretions when she has a cold – making it easier to clear the lungs w/the cough machine & suction machine – making it easier for her to breathe.

 

The Vest

The Vest system uses a technology called high-frequency chest wall oscillation (HFCWO). The system has an inflatable vest connected by tubes to a generator. During therapy, the vest inflates and deflates rapidly, applying gentle pressure to Malorie’s chest wall. This works to loosen and thin mucus and to move it toward the larger airways, where it can be cleared by coughing and suctioning. www.thevest.com

Wedge

Malorie’s daddy built this wedge for her after her first PICU hospitalization in April 2004.  It allows her to lay with her head tilted down for chest percussion and nebulizer treatments – helping with drainage and opening of her lungs.

Feeding Pump

Malorie had a g-tube placed on March 15, 2007.  She feeds overnight continuously via a feeding pump – EnteraLite Infinity pump.  If anyone is interested in the list of ingredients in Malorie’s 24-hour feeding mixture – feel free to ask!

 DAFO’s

The DAFO (daytime ankle-foot orthosis) helps Malorie maintains the correct alignment of the bones in the foot and ankle. With SMA patients’ low muscle tone, they tend to develop “foot drop” – tightening of the foot/ankle muscles – no longer allowing free movement.  This has started to happen with Malorie – so now she wears these DAFO’s and it helps to slow the progression.  What would we do if Malorie could no longer wear all of those pretty girl shoes?!  www.ortho4peds.com

 

Knee Immobilizers

Malorie has developed knee contractures – from always being in the seated position.  So, to help loosen those tendons and make her knees more flexible, she sleeps with these hinged immobilizers (KAFO’s – knee ankle foot orthosis).  As her knees become more flexible, we have the option of tightening the hinges – to get even more of a stretch overnight. www.ortho4peds.com

 

Potty Chair

Malorie has a Rifton Blue Wave Toileting System.  It can be mounted to a standard toilet, or as a complete toileting system for use as a freestanding commode, over-the-toilet commode, a rolling shower chair, and mounted toilet seat.  http://adaptivemall.com/smcoblwatosy.html

Bath System

Malorie cannot sit up unassisted, and especially not in a slippery bathtub – so we use the Leckey Advance Bath System (size 2).  The seat can fully recline, as well as sit up straight for her to play – and it has lateral supports to keep her straight.  We even have to take this with us when we travel – or else she cannot take a bath – not a light traveling family!  The system includes a shower trolley – to hold the bath seat higher for when Malorie takes a shower vs. a bath.  http://adaptivemall.com/lecbatchair.html

   

Vehicle Lift

We have a Bruno lift in our 2007 Buick Terraza minivan.  The arm swings out and lowers to pick up “Big Purple”, then lifts and swings in the back of the truck.  We wouldn’t be able to take Malorie’s chair anywhere without the lift!

 

Neck float

Malorie loves to swim – and, best of all, she’s free when she swims – thanks to her neck floatie!  The float keeps her head above water – while allowing the rest of her body to be free in the water.  If you saw her swimming with her neck floatie on – you’d never know anything was wrong with her – she’s a fish!  Malorie currently uses the medium size float (40-50lbs) www.danmarproducts.com

 

Bike

Malorie rides a bike!  She got it in the summer of 2005.  It is a Freedom Concepts Discovery Series (DCP 12 mini) – pink, of course!  Now she can ride a bike just like all the other kids!  It has a chest harness and feet straps to keep her secure.  It has a handle on the back for pushing – and when pushed, the pedals go around – making Malorie feel as if she’s doing all of the pedaling herself!  She’s so proud of her new bike!http://freedomconcepts.com/products/discovery/dcp12mini.html

Floor sitter w/tray

Malorie has a Special Tomato floor sitter and wedge system – with tray.  This chair allows Malorie to play on the floor at the same level as her peers.  It has the ability to tilt, as Malorie’s strength changes throughout the day.  It also has the lateral support that she needs to sit up straight.  And, of course, it’s purple (size 2)! http://adaptivemall.com/sosiwitiweki2.html

Stroller Wheelchair

Malorie just received her new Otto Bock Kimba stroller wheelchair in December 2005.  She previously used a Convaid Cruiser stroller that she received just after she was diagnosed.  However, the Cruiser stroller was a “one-size-fits-all” wheelchair – no tilt, no recline, no support – which was fine back then – but now Malorie’s body has changed and she needs all the support that she can get.  The Kimba stroller offers just that – it’s a custom seating system – which means our seating company measured Malorie and customized the seating system just for her.  It does offer both tilt & recline.  It even has a little basket – just like baby strollers – very handy for Mom!!  The good thing about this stroller is that it collapses just like a baby stroller – other stroller wheelchairs require that you take the seating system off first, then collapse the base – way too much work for a quick trip out – which is why we have this stroller wheelchair.  If I wanted to take something extremely heavy and cumbersome – I’d just take “Big Purple”! J http://www.ottobock.co.uk/cps/rde/xchg/SID-3F574DD1-E1DE14EA/ob_couk_en/hs.xsl/1386.html

Power Wheelchair

Malorie drives “Big Purple”.  It is a Permobil Koala power wheelchair – she received it approximately 2 weeks before her 2nd birthday – so, she’s been driving since she was 1 year old!  This chair has 2 controllers – one that Malorie uses, and one for an adult standing behind the chair (for when she gets out of control and Mom or Dad have to take over!).  The chair offers both the tilt and recline – and it raises and lowers to different heights as well.  It has variable speeds – of course, Malorie only likes to drive in the fastest speed – and yes, she does know how to change speeds!  The chair weighs approx 230 lbs – so we have a lift in our minivan to lift/lower it. www.permobilusa.com

 

Mobile Stander

Malorie has a Standing Dani – Grandma & Grandpa Fryc bought it for her winter of 2006 – wow, what a great, great gift!! www.standingdani.com