Bipap mask

John uses a Wisp mask with his trilogy machine.  Unfortunately it’s been giving him some severe bruises.  He complained about the bruises, and I believed him — but it wasn’t until I gave him a shower, and I saw these red/blue painful looking spots on his head that I realized just how bad it was.  When you wear the same mask every night and it pushes on the same area you’re bound to get bruises.

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John is a side sleeper, and you can see with the design of this mask how there is a big pressure point right near his temple where the harness doubles up.  Same thing right below the ear — this spot was creeping up and putting sores on his ear.

So, I tried to come up with a solution where there are no pressure points.  My idea was to use a skull cap as the base.  For my prototype, I’m using a men’s dri-fit athletic skull cap.  It says it wicks away sweat, plus being a men’s size I’m hoping it won’t squeeze his head too much.

Next, I got some elastic waist band with button holes (like the kind that’s in kids pants).  My plan was to sew it to the skull cap and somehow attach it to the mask.  We had an extra mask (because we’ve tried several – including a kids version).  It fits around the nose piece.  I was able to cut the mask on either side of the nose piece and save this to use for this project.

img_0968 Here’s a picture of the nose piece with the section of mask I cut off attached to it.  I sewed three buttons to it.  I’ll use the elastic with button holes to attach to the buttons on the nose piece.

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Here’s a picture of the skull cap with the elastic sewn to it.  I picked the placement of the elastic after I put it on John’s head and tried to safety pin it in place.  I first had one strip on each side, but discovered when it was all connected up that the nose piece was being pulled down – so I also added the elastic to the top.  I bet it’s pretty difficult to get the angles all right so it’s pulling perfectly centered on the nose-piece.

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Here’s a side shot of it all together.  Looks kind of like an alien, right?  Here’s hoping there are no more bruises !!

Jacket Modification

It is getting ever harder to get John into a jacket. A bulky winter coat is even harder.  We bought a winter poncho that you can just put over his head.  It definitely has its benefits, but one of its problems is that he doesn’t have access to his hands.  Also, it has to go over his wheelchair controls and then he has to drive without seeing them.

I had a couple ideas to try and I had a hand-me-down jacket that I could try them on.  The way we put a jacket on John is that we first put in one arm.  We pull the coat around his back and then try to shove his other arm into the other arm hole.  But when you can’t bring the coat around very far, and when the arm is essentially stuck at a right angle, this doesn’t work very well.  My first idea was to put a zipper down the back of the coat so I could bring it around farther.  My second idea was stolen from an accessible coat I saw that cut out the back below the waist so it wouldn’t be quite so bulky and bunch up — since he’s sitting anyway.

Here’s a picture of the front and back of the jacket.  I bought a 9″ zipper for a couple bucks at Joann Fabrics.  I nervously cut down the back of the coat, slid the zipper in and sewed it back up.  All in all it only took me about 20 minutes.  A record considering my sewing ability.  I measured the length of John’s back to his waist, then cut out the extra material.  I sewed a quarter inch or so from the raw ends just to keep the jacket from falling apart.  This is definitely not fashion wear.

We haven’t had a lot of cold days yet to really test it out.  We only really have put it on/off to try it.  It’s better, you can pull it farther around his back with the zipper down – but it’s still not easy.  The arm holes are just too narrow still.

But this is a good start to play around with and maybe improve on.

 

Luke’s Beach Walker

I got a request for the spreadsheet so that Robyn could build a walker for her son before they went to the beach.  They were able to build the walker and here are the results from their trip…

Hi Jennifer. I have been meaning to send you these photos from our beach trip. It was great to have the beach walker and for Luke to have more freedom on the beach!! I didn’t get any really good photos sadly – I think we must have gotten sunscreen on the camera lens. But I wanted to at least share these with you and say a big thank you. We are so grateful for the resources you provided and for the wheels. We learned a lot with this “model” and will hopefully improve upon it for the future models. Luke has high tone and spasticity so he needs something very sturdy to support all of his weight. Next time we probably need to make it with bigger PVC (we used 3/4 this time) and larger wheels. When we do upgrade, we’ll be glad to send the wheels back to you.

Halloween Minion Costume

 

A lot of people were sending me posts of these really great wheelchair costumes.  It felt like a challenge to try to come up with something.  I honestly didn’t expect that it would turn out that great – knowing my artistic ability, but I’m very happy with the results.

I went to Sears and asked for a box.  They kindly unpackaged a washing machine for display on the spot and gave me the box.  I thought I’d have to build some kind of structure to hold the box up, but it rested perfectly on the footrests in the front and on the wheelchair frame in the back.

I was thinking I would paint the box, but my husband suggested using wrapping paper — and that was key in making it work.  I found a picture of a minion and just kept decorating until I thought it looked right.1

 

 

 

Argentinian Walker

I received this email the other day…

Hi Jennifer!
Thanks for the spreadsheet. I was very anxious and we made our first attempt and we are really happy with the results. He is also very happy!  We could not find the couples for the corners so we used parts from canvas pools. So we had to buy other type of pipes.  I am sending a photo so you can take a look at it!
Thanks a lot for the help and for posting the tutorial.
Warm regards from Argentina
Belen

I love the creative use of what they had on hand to fit their needs.

Argentina_Walker

Sunday Afternoon Bike Trailer Modification

IMG_0029I was cleaning the garage out and came across a square metal pipe.   Later, I was staring at the bike carrier wondering whether to get rid of it or not.  John’s legs no longer fit inside,  and the last time we tried to ride we had to shove his feet inside so they wouldn’t hit the bike tire.  For some odd reason, he didn’t like that🙂

Then I remembered the scrap metal pipe we had and had an idea.  Charles helped me cut the pipe and drill a couple holes through it and voila! John’s legs can now hang out without fear of hitting the bike tire.

We took a ride through the neighborhood with John yelling, “Faster… faster !!”

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Shower Window

shower window

shower window

We recently worked on our bathroom and put in a roll in shower.  I definitely did not make that!  But one little thing I did do to make showers even easier, was to cut a flap into the shower curtain.  I tried to take a picture of it and at the same time not get too much of John, so it’s a little hard to see.

I hot-glue-gunned clothes pins to the flap so I could open and close it when needed.  When our older son takes a shower, we close the flap.  When John takes a shower and I’m ready to wash him, I open the flap and clip it open with the clothes pins.  It keeps me drier!

This was a proof of concept attempt, and it definitely works very well.  However, the next time I think I’ll make the window smaller.  Also, the hot glue gun is only sort of working… the clothes pins will stay on for awhile, but eventually fall off and I have to glue them on again.  I might try magnets next time, but I’ll still have to figure out a different way to attach them.  We’ll see.

Bryan made it

Trix lives in the Philippines and ran across this website.  She knew that this walker could help her son, Cash, so she contacted me.  After passing on what info I had, her brother, Bryan, built this walker.  They made modifications that worked for them.  They didn’t have all of the same pvc options that are here in the US, so they used what they had.  They made use of rubber wheels instead of the plastic ones, and added some support on the sides.  I love this.  Now, maybe somebody will see this post and think, “Ah, that’s just what I’m looking for — if I just tweak this piece, and that piece it will be perfect for what I need!”  One thing I want to mention is that Trix hopes to make more walkers to help others less fortunate in the Philippines.  Thank you Trix.

Cash's walker

Cash’s walker

Meet Johnathan

image1This is Johnathan.  Johnathan’s mom was suffering from HeMBIB* syndrome from having to carry him to and from the car.  Thanks to a new purple walker Johnathan can now walk to the car on his own.  I learned a number of things while making this walker.  First, since Johnathan is bigger than some of the kids I’ve made walkers for, I thought I could use heavier caster wheels.  But,  those wheels just didn’t work very well and would even get stuck going over carpet — so I switched back to the lightweight-plastic-blow-molded wheels.  Also, I tried to put pins on the back frame so the walker could be taken apart, but it just wasn’t sturdy enough, so I ended up gluing it together.  And speaking of sturdy, instead of the 3/4″ pvc pipe that I made most of my walkers with, I went with 1-1/4″.   Even though Johnathan already owns a walker — it’s usually kept in the car.  This is a tool to make daily life easier by helping him get from the house to the car without having to hassle with the ‘real’ walker.

*Help My Back Is Breaking