Winter Coat Project

If you're a crutch user, you know how cumbersome it can be trying to use them with a warm thick winter coat.

Elena has tried the half-cuff option for loftstrand crutches; she needs the full cuff to move her best. It's difficult for her to stuff a winter coat sleeve into the cuffs--most of the time, she just shoves her forearm into the cuff, so the coat stays scrunched up right around her elbow, leaving her arms cold and uncomfortable.

I've tried working around this for years. Typically, a grown-up would help E get her coat inside the cuffs. We are trying very hard to enable Elena to be as independent as possible, and this includes dressing with coats or other bulky pieces. I have a dozen or so sketches, some involving a spring loaded cuff (which I don't have the equipment to make) and others involving creative adaptations for clothing.

One thing I didn't have was a spare coat lying around in order to test out my model. I tried with some extra fabric, but it's just not the same as using an actual thick garment. I couldn't find one that would fit Elena at a thrift store, and I didn't want to buy a brand new coat, because I was going to cut it. I was looking for an inexpensive test option in case my idea failed. I couldn't find one.

I decided to write to one of our favorite retailers to ask for help. (Please keep in mind, I am not paid to advertise for a retailer. Occasionally I have been asked to write pieces and have received compensation, but this is rare and always disclosed.) I wrote to Boden, telling them about my plan, and wondering if they had any damaged/factory seconds that I could obtain at a discounted price. They asked to see my sketches, which I sent, and had some questions regarding Elena's color preferences and size.

Much to my surprise, a new coat was mailed to us a few weeks later, completely free of charge! It is BEAUTIFUL. They paid attention to the material--a bulky coat (like a puffer jacket) would be too much material for me to handle once cut; the coat is waterproof, versatile, warm and relatively thin. Elena even loves the color. She loved it so much, and didn't want me to "ruin it" by trying my adaptations.

But we did it.

The Coat:

"Cosy Waterproof Coat"

We had Elena wear it for a week. Here she is, wearing it (fits beautifully!) to swim practice on a rainy morning. She just stuffed her arm in the cuff, the sleeve is mushed up around her elbow.

Sleeve mushed up above cuff

We decided to try to leave enough sleeve so that it would bump up against the cuff just a little, with the idea of creating a detachable bottom portion of the sleeve to accommodate her crutch cuff. I wasn't exactly sure if I should try to make a long "crutch pocket" out of the rest of the sleeve, or have it attach to the cuff, or have it attach to the jacket. First I had to make the actual cut.

I went to a friend of mine, JW, who enjoys sewing and knows a LOT about some tricky stitches. I didn't have confidence in my sewing abilities--but after talking with her about the plan, she knew she could make it work!

HERE WE GO

Two "coat cuffs"

       
JW made a "hidden seam". She folded back both edges of the cut coat towards the inside, and then expertly sewed them together by expertly guiding the needle through the seam by touch so as not to puncture the outside of the coat. It sounds complicated--but the hardest part was getting the folds right among the inside padding of the coat (in my opinion).

Folding towards the inside

Pinned and ready to sew!

       
JW did this to each end of the coat cuffs and the coat sleeves. Here is a close-up of the seam, once sewn. I think I can do this type of seam, but it would take me MUCH longer than JW!

Look at that pretty seam!

All Seamed Up!

At present, I've been trying different methods of using the coat cuffs with E's jacket. In the end, they all look largely the same as she's moving around, so here is a current picture of the coat and separated cuffs. Elena is testing out what I'm calling "coat cuff tethers". She has acknowledged that if she has to snap on/off the coat cuffs to either the rest of the coat or the crutches, she'll probably just stuff them in a pocket instead and end up eventually losing one/more cuff/s. I'm trying to find a way to keep them attached to the coat, but easy to maneuver with the crutches.

Coat shown with tethers

Coat on with tethers (a bit too long)

       
The idea is E can put her coat on, then while sitting or standing, put on her crutch cuffs and (again, sitting or standing) then use one hand to help the other put on the coat cuff.

Side view. Coat cuff dangling

Putting on second coat cuff

       
Once the coat cuffs are on, the coat itself fits well, there are no bunchy elbows, and most (if not all) of Elena's arms are warm and cosy.

Completed look

Front view, coat cuffs on

       
The procedure of putting these on and off is still a work in progress. The tethers are a bit too long (I attached them with a thin double cord to each of the shoulders, not one long cord from one coat cuff to the other--like you've probably seen in a lot of toddler mittens) and sometimes they spin around the crutches. Elena complains that her hands get caught in them a little, so I can fix that by braiding or knotting the two-ply cord. She hasn't mastered the art of putting her coat on with dangling sleeves with a backpack (I recommend she hold the coat cuffs in her hands while putting on her backpack). It'll take some practice, no matter the final iteration of separated sleeves. I strongly believe that the coat cuffs have to be physically attached to the coat in some way, as to not lose them. This alteration also leaves Elena's hands cold, so she'll have to wear gloves or crutch pockets.
         
Thoughts? Suggestions?

HUGE thanks to Boden, for giving me the opportunity to try this with a coat that fits Elena exceptionally well, and that is perfect for the weather and the challenges associated with this project. Thank you to JW for her sewing expertise and her time to help make this coat a success!

Science Fair

When Elena started 6th grade, we talked about the Science Fair. When I was young, it was mandatory--and I knew that if Elena was to do a quality project, we'd have to start early. So, we started discussing ideas in September 2016,  and the project began shortly after. We found out in January 2017 that the Science Fair was optional. She wanted to do a project that "might help people like me with CP". I suggested she incorporate 3D printing. We have access to a 3D printer through our local library (and they have some at school, but not in any of Elena's classes at that time).

Elena decided to try to make handed grips for her crutches. As we were researching this idea, we noticed that there weren't options for kids that were readily available. They are common for adults, especially those that use canes. Handed crutches (anatomical grips) are supposed to be more comfortable and reduce fatigue.

Our orthotist let us use his 3D scanner to create 3D images. We had to make hand impressions on molds on her crutch handles--we planned on using play-doh, but when the time came we couldn't find any--so I quickly made some pasta dough and we used that. It was a bit rushed, but the strong dough was probably a better substrate than soft play-doh.

Elena took the images and manipulated them using the program 3D Builder. I helped with this--E knows the program better than I do, but I can visualize things in a 3D space better than she can. Together we made a decent team. We printed out some grips, made some changes, tried again, etc. Elena ended up with a pair of handed grips, with memory foam on the bottom (adhesive backing), and attached them with a velcro strap to her crutch handles.

We brought them to her therapy center to see if other crutch users liked them. There were only two other kids there who were able to try them; we'd like a bigger sample size. Both users were much bigger than Elena. They both really liked the feeling of the grip between the thumb and forefinger, but didn't like the rest of the mold b/c it was too small (E's mold edges around her palm, and this was uncomfortable for the bigger kids). We compared the 3D printed grip to different grips that were commercially available (both at the therapy center and at the Science Fair). The grips tested were Elena's own: gel wraps (a cushy, large handle cover that E doesn't like b/c they slip and they get sweaty) and neoprene sleeves (thin, slight cushion; slippery when sweaty). E prefers her plain handles over both of these.

(As an aside, this entire project--making molds, manipulating files, putting together the poster and scrapbook was no joke. It's like...executive function on steroids. If your kid has issues with this, I cannot stress enough....START EARLY!)

Presenting: E's Science Fair Debut!

Customize Your Gait

I like Elena's project name. Her hand placement and comfort does affect how she walks, so I think it's a fitting title.

Presenting at her first Science Fair

On the table is a scrapbook that details how the grips were made/scanned, and how the files were manipulated. There are also different versions of the printed grips (in blue plastic).

Here are a few page excerpts:

Notes from 3D Builder

Final Files and the prototype printed models

We brought old crutches and put different grips on each handle, allowing visitors to try out the grips and vote.

Which handgrip is your favorite?

Plain Handle

Gel Wrap

Neoprene Sleeve

3D printed

polls

Elena's project was entered in the Demonstration Category. She did a great job explaining her work to the judges and the public. One judge gave her future access to a 3D scanner, and a 3D printer (with different filaments), and said she should enter the regional fair next year! We plan on trying this.

Want to help us?

We will be uploading these 3D files to Thingiverse, a database that has 3D files for use to modify and print. If you have access to a 3D printer, you can use our file (or our future files) and try it yourself! We'd love to hear about your experiences.

She did not win, but got an honorable mention in her category. We are very proud of her!

FYI: Elena prefers these grips to her plain handles, and has been wearing them since the week before the Science Fair. She's making a list of things to tweak for next time.

**this post will be updated once our files are uploaded to Thingiverse. Check for future posts under the keyword "crutch grips"

School, Summer, and Operation possibilities

School

So, right now Elena is having her Standard of Learning tests in school. For anyone not familiar with these test, this is a nationwide standardized test administered in public schools for grades 3 and up. the testing is controversial; the scores do not enter into the (elementary) student's record (they do in higher grades), but rather are used to assess how well the teachers/school are conveying material to students. In other words, it is a measure of the school, not the student. I have taken  few of these; the questions can be quite difficult, and some require more than one degree of inference. The tests are not mandatory, per se; parents can opt out their children--but what they may not know is when they do, the score for that student becomes a zero and lowers the school performance record.

These tests bring out the worst of anxieties in students, and Elena is a perfect example. I wrote about this during her third grade year; she was awash in nervousness and extremely disruptive. Tackling anxiety, quite simply, is going to be a problem for us (with Elena). While I don't look forward to testing, I do think it can be a way to measure if Elena is making progress dealing with her emotions.

Which…is debatable this year. Last night was the eve of her first (out of four) days of testing. She has accommodations in her IEP for extra testing time, but since the test is divided into two days (thursday and Friday) she cannot go over the weekend (or start early) if she needs even more extra time. Granted, she has the entire school day if she needs it (most kids are done in 3-4 hours, with breaks). She is, without a doubt, very articulate in her fears (once she calms down enough to discuss them) but she can be incredibly disruptive when given a lot of attention (our normal reaction is to disengage and let her calm down on her own--she doesn't like that b/c she feels we are ignoring her). After a huge meltdown the eve and morning of the test, I had low expectations for the day.

But, Elena surprised me. I received only positive feedback from her teachers regarding her test-taking. I'll call that a win.


Summer

I am trying to get plans in order for the summer. Currently I have spots reserved for both elena and Vivian and Camp Holiday Trails, but I haven't finished all the paperwork yet. I also applied for funding for Elena though the IFSP program (more on that later) an dI'm trying to wait to pay for certain summer things until I hear back regarding the funding. Dealing with heat, mobility, and size (vs. peers) are going to be issues for Elena this year I think. Heck, the heat is an issue for me right now--and I LOVE hot weather. I haven't been able to acclimate to the warm weather b/c I still have a difficult time navigating outdoor terrain. I'll get there.

In case anyone cares, here is a current picture of my "winky face" knee (almost 7 weeks post-op).

My left, your right. Still swollen and hates to bend.

New Op?

I'm currently researching epiphyseodesis (bilateral anterior distal femoral tethering) for Elena. Her main ortho recommends it, and E is scheduled for this at the end of September. In layman's terms, this is referred to as growth plate tethering. Basically they put some sort of splint/staple on either side of the distal femur (maybe proximal tibia?), kneecap side. This will temporarily halt Elena's bones from growing in the "front" of her legs (like mine, shown in the picture above), while allowing the back of her legs to continue to grow--essentially "growing out" of her crouch.

It's outpatient, quick recovery (comes home in some bandages only), slow changes, and temporary. The tethers come out in about a year or so and then she would continue growing as normal.

It seems like a perfect solution for a growing kids with CP. I'm sure it's not perfect, but it sure sounds good. I'll be digging up more information and posting what I find out.


SaHM experiment

My first attempt at making crutch covers! I'm not great with a sewing machine, but I am trying. These are a little snug--I'll probably perfect it with the next few attempts. Better than the hard plastic, and much cheaper than buying them (with no color choice).

Moi as hand model

Pink canvas and orange soft interior

Baby, it's Cold Outside

Well, it looks like winter is catching up with us!

Like lots of kids with spasticity issues, it's harder for Elena to move in the cold. Her body gets stiffer, and if she layers up in bulky clothes, it's harder for her to move too. Elena can wear gloves, but she can't get them on correctly by herself--not yet, anyway.

We had some convertible mittens--fingerless gloves, with a "mitten" top that can go over them--but Elena needed the mitten off to zip up her coat, and by the time her hands were in her crutches, she couldn't get the mitten top on. So, she'd just wear them with her fingers bare, getting cold the whole time. I ended up buying some knit gloves instead, as I figured her hands would be warmer that way. Still, not the best solution.

The issue is, most kids are fine in those regular gloves--if their hands get cold, they can pop them in their pockets to warm them up. Not Elena--she needs her hands on her crutches.

It's Mother of Invention time!

Introducing: Crutch Mittens 1.0



I don't really have a pattern; I ended up "winging it" and Grandma helped with her sewing machine. Basically, I used a 9" salad plate as a pattern for the mitten, cutting some off the top to make it even for the cuff. We left a 1.5" (ish) hole for the crutch handle to go through. The cuff is made of a little thicker fleece than the pocket, so it will "stand up" better. There is a tie to secure it to the crutch.

Here's the mitten as it goes on the handle:



And then the tie:



Voila! Happy Warm Hands!



My original plan was to have the mittens hang from the crutches (off the handles) when E was indoors. That won't work, as they are too bulky if they are off the handles. So, when E is indoors, the Crutch Mittens have to be removed and put with her coat. This means that currently Elena will need assistance getting the mittens on and off the crutches, b/c she can't tie them on the side (the ties are a little short--and even if they weren't, I don't think she can tie them right now. I might have to switch to velcro). So, this version isn't perfect--but E LOVES the fact that her hands are warm!

Mother of Invention: Rain Shoes

Elena has, technically, two pairs of shoes.

E's footwear requirements are pretty strict. Her main pair of shoes are the ones she wears with her AFOs; the shoe fits the AFO, not her foot. It has to be wide to accomodate the brace, and has to be able to be fastened tightly to try to keep her feet from wiggling out of the shoe OR the brace (so, no flimsy straps, elastic slip-ons, or laces). They also need to be light (Hatchback shoes are made to accomodate AFOs-but they are twice as heavy as a normal sneaker). Elena also has a leg length discrepancy; her right leg is longer than her left. We put a lift in-sole on her left shoe (we can't put it inside the shoe, b/c there is not enough room with her AFO) to equalize her leg lengths. In order to do this, the tread must be thick enough to accomodate the lift.

All this makes for a VERY expensive pair of shoes--and that doesn't even include her AFOs. Luckily for us, Elena gets a new pair of shoes about every 5-8 months, depending on how much she's grown.

Her sneakers (the shoes she wears without her AFOs in many of the PT videos) also have a lift in-sole, as well as customized arch supports. The arch supports were designed to try to keep E from excessively pronating her feet, especially on the right; our orthotist did not believe they would help much, but said they wouldn't hurt. Since Elena is typically not flat in her shoes, at least when she is moving (dynamic tone + contractures), the arch supports cannot do their job. Still, I think it was worth trying. In any case, these second pair of shoes are also quite expensive due to the LLD and the arch supports. A better sneaker for Elena would also include some ankle support (like a stiff high-top shoe, with the same thick, hard sole).

That doesn't leave us many options for dressing up.

But, on a less superficial tangent--what about the weather?

Rain, snow, and excessive heat are a real problem when it comes to E's footwear. For snow, one of the moms on a newsgroup I belong to mentioned A SHOE BY Circo (Target Brand) and they were fantastic, at least for putting on over her AFOs (E has a hard time moving in snow, for obvious reasons as well as the weight of the boots).

Rain, water, and mud have been a real pain. So, I had to become an inventor.

I needed some kind of rain boot that was 1) cheap, 2) would fit over E's AFOs AND shoes (as she'd be going to school), 3) had traction, 4) weren't too big or heavy, 5) and that would protect her shoes from getting wet and/or disgusting. I liked the idea of an overshoe, but all overshoes either wouldn't squeeze over her AFO + shoe or required E to "point" her toe to get into the boot (impossible while wearing her AFOs). So I got the idea of having the overshoe being an "overtread"--and VOILA!

Using this ingenious product called Cleatskins (marketed to put over sports cleats to prevent them from dirtying up a car), and a little "gaiter" type of "collar", here's E's rainshoe!

Cleatskins alone


cleatskins on shoes


I thought this idea of using a plastic bag would be great--and super cheap, too. Turns out it doesn't work. When E wears the bag (with a velcro strap around the calf to keep it from falling down), the silicone slips off the bag and falls off. So, I need to glue/sew/strap on a waterproof fabric upper to the cleatskins. That's okay...I"ll attach this picture to this post once I do it.

Mother of Invention: Beach Walker

Okay, so here it is! Well, it's not technically ready yet. But here is the "prototype" of E's beach walker!



What I wanted was a walker-type contraption that Elena might be able to push on sand. MIGHT. Sand is THE MOST DIFFICULT solid surface to navigate, so this little experiment might very well end up in a big pile of FAIL.

Ideally I wanted a wheel like the Wheeleez wheel; but those run $40 dollars apiece, for the smallest size, not counting the axle or other fixtures. And since we only visit the beach for a few days of the year, I can't spend a lot of money. I consulted one engineer, two specialists who deal with special needs rehab equipment/beach wheelchairs, our orthotist, my dad, and called or visited every store in town, and several online, that sold wheels. I considered wheels, skis, runners, balls, and plates; I needed something that would maneuver in sand (wheel or something that would glide) and be wide enough not to sink, and ideally be able to turn or be dragged to change direction. And be lightweight enough so a ~30lb girl could push/turn it.

This wheel might be too thin...but it's the best I could find for the price. It's a $20 wheelbarrow wheel (4" wide, 16" high--it's also heavy, but it has inner ball bearings for a smooth roll). The frame is made of 1 1/2" PVC pipe; total cost of the pipe and fittings were ~20 dollars. The axle was $8, I think.

Our orthotist helped me with the design and measurements, and cut the pieces. The PVC cement and primer together was another $8.

I am still considering sliders--large plastic bowls, actually, for the rear of the walker. Or maybe a different type of "runner". I'm also going to add a hook or two on the top of the frame (I haven't decided exactly where yet) so E can hang her sand pail.

Vids trying this contraption in action should be posted before Saturday--that's when we leave for the Beach! Hopefully, we'll find a place to watch the US-Ghana game on the way down (as if the girls will let us sit there for 2 hours...one can dream, n'est-ce pas?)!