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!

Carrying

Since Elena is mainly a crutch user, her hands are busy most of the time. This makes carrying difficult.

We've been trying to give Elena tools to be as independent as possible, but carrying is always at issue. While she is at home, and inside the house, she does not use her crutches. We expect her to do as much as possible on her own, safely. We have been practicing carrying dishes (mostly empty dishes) for a few years now; E clears her place after eating, which means bringing any dishes/cups/cutlery to the sink. She will typically try to carry things in one hand (which can mean a few trips) and steadies herself along the wall, table, or other surface as she walks (which is fine, if her hands are clean. Ahem.). In general, E hates making more than one trip to do this, but we're pretty firm about being safe with dishes and cutlery. She puts away her own clothes (can not carry the laundry basket), and carries toys and books (typically one-handed, but can use two if the distance is short).

At school, she carries her own backpack most of the day. This is touchy because her backpack is heavy (much to my dismay; we've tried lightening her load, but it is largely a losing battle with the school district. They refuse to support ultralight material since she has an aide that can carry for her if needed. I understand this, but they miss the negative social impact of E having to have a grown-up at her side as a middle schooler). If she works too hard on carrying a heavy load, she crouches more, slows down, and tires quickly. Her aide does a good job trying to balance Elena's desire to be self-sufficient with her expectation to function for the school day.

She has a standard sized backpack; we she does not generally carry her school computer to/from school as she has one for school and one for home. She does carry it from room to room, during the school day, as needed. We keep her 3-ring binder thin and regularly empty papers to keep it light. She typically has 2 copies of required books (normally for language arts; one for school and one for home). She carries a water bottle also, but only fills it halfway to keep it light. No matter what we do, it's big for her.

BACKPACK PICTURE, before school day (max weight)

Out of school, and especially on trips, we are trying out carrying options. The end goal is for Elena to be out with friends, and able to 1) answer a phonecall, 2) pay for something, 3) carry something she buys with her (in a bag, or backpack, or on a tray to a seat) and keep up with her group.

She, like many middle schoolers, wants a phone (she does not have one; this is another subject all together) but even if she DID, she has to prove she can carry it and use it. Her clothes are largely knits (they are easy to get on, and are not stiff) and almost *never* have pockets. I did find these, which are pretty awesome.

She has several sized backpacks, but if the phone rings, she can't get it out fast enough to answer it. It is also difficult for her to get into her backpack (if it's on her back) in a standing position (she prefers a place to set her crutch, possibly sit, take off her backpack and rummage through it). Purses, for the most part, are unusable b/c they end up swinging into her crutches or falling off her shoulders.

A hip pack is a great option; we have several sizes (small, large) and a few colors. Elena doesn't love the look. But it works.

 

Small pack. Doesn't hold much.

Large pack. Easily holds phone, easy to get in/out. Of course she doesn't like it

I've also considered a holster-type bag, where it would attach to belt loops (most of her clothes do not have these) and be secured by a strap around the thigh. But it would be potentially problematic in the bathroom (in general, belts are for E) so that idea was nixed.

I have considered adding pockets to all of her clothes (kangaroo zip pockets) but I have never sewn a pocket in my life, nor have a ever sewn in a zipper. I bought these shirts for the girls in the past. I've considered making a vest, with pockets all over, but my sketches don't look good enough so I haven't done much with it.

We have a few magnetic pockets that can are secured over the waistband of pants. Overall, it's pretty useful--but some are too thick and heavy, and others too small to hold much. My favorite is this one; lightweight, with a zipper. Again, possible issues of losing the pocket during a bathroom trip (in the past, the instruction is to take off the pocket and stick it to a metal surface in the stall before toileting). And, unfortunately, the pockets have erased hotel cards in the past (magnets!).

Large magnetic pocket. A little bulky, and uncomfortable when sitting.

I looked at bags that attached to crutches, but they are very small and don't seem to be built for quick accessibility. I also worry if she puts the crutches to the side, that money/keys could be easily stolen.

We had an OT group work with us this summer on a carrying option. It had to be accessible from the front, not get in the way of using the bathroom, be secure so things wouldn't fall out, and cute. They came up with the "Pocket Sash", which works very well. We brought it out with us (it was awesome in New York!), had her carry a few things (including money, something like a phone, and her clip-on sunglasses).

Pocket Sash!

Elena's biggest complaints about the Pocket Sash were 1) it was hot (really?) and that 2) she was upset that you couldn't see her outfit b/c the sash blocked everything on some of her favorite shirts. So while the Pocket Sash was incredibly useful, it isn't working with Elena's fashion sense on some days. I still think this is our best go-to-carrying option. I could alter it a bit, but I really think the pockets are in a great position for her.

Still working on this. Suggestions, anyone?

Rainy Family Day

The University presented a Family Day during the Film Festival. There were lots of events in which to participate, but the day was very rainy and it was crowded inside the building.

I wanted to take the kids especially for the instrument Petting Zoo--where kids could get up close and personal with different instruments and students that play them. Vivian tried almost every one, and got a sound out of everything she attempted except the trumpet. Elena didn't have as much luck; her mouth muscles and breath support are not as strong. She still enjoyed trying, and especially liked the cello.

Testing the Cello

Playing the Trombone!

Playing in the rain

A blog reader recently commented on what we do in rain, given Elena only has one pair of shoes, really. I found a pair of "overshoes" on amazon.com and they work beautifully in rain! There are several styles available, but the sizing is questionable. Elena wears a size 2.5 New Balance shoe, and the size overshoe we bought is a size "S/M". The overshoes are not high quality, and they are hard to get on/off but they do work well for our purposes. This has been the first time E could really stomp/splash in a puddle!

Her umbrella hat continues to be of good use also. The attachments on the head band are a little uncomfortable, so I think I"ll be making some changes by sewing on a sweatband of sorts.

Rain Ensemble

Another change of note: look at her crutch tips. These are called Flexy Foot crutch tips, and they are awesome! For some reason, Elena has been wearing through her regular crutch tips--about 3 pair per month. She's been growing, and I hadn't realized this wear and tear with her last pair of crutches, but it is what it is. These Flexy Foot crutch tips have lasted over a month, are still in great shape, and have helped ease her fatigue while getting around on crutches. They are expensive; I bought them for $35.00 per tip (they do have replaceable end caps, which I haven't had to buy yet) but right now, I think it's worth the cost.

October: Up to Speed

So, back to present time.  Elena got her new knee brace (we refer to this as the "sleeve") to help alleviate pain from tendinitis.  It can get hot, so sometimes she takes it off halfway through the school day.  With the weather getting cooler, this happens less.

The Sleeve

The sleeve is bulky, but not enough to really limit her movement.  I can definitely see in Elena's stance when she is tired.  She is also pronating worse (sinking in at the knees from spasticity, tendinitis, and fatigue) and it's leaving her navicular bone and malleolus with pressure points from her Sure Step orthotics (with the yellow velcro in above picture).  It's not very bad, but it is different from the summertime.  I think another round of Botox injections might be considered (hamstrings/adductors) to help with the constant crouch (we see her ortho at the end of the month).

I've made a few changes at home, to try to get the kids (ahem, Elena) more excited about self-sufficiency, homework, and having fun.  If you have other ideas where we can help E's self-sufficiency, efficiency, or things that have worked for you in the home--please comment!

I bought a set of crutch holders from Walk Easy, Inc. (that's her brand of crutches) and have them next to wall hooks.  It keeps them from being a tangled mess with shoes.  Once the kids get home, they hang their backpacks, open them (so I clean out their lunchboxes and homework is on the brain if there is any) and E hangs her crutches by pushing them in the clamps.

"Crutch Park", shown with a broomhandle

closeup of clamp

In the kitchen, I made a space under the counter to put plastic dishes and cups.  That way the kids can get a drink or a snack on their own.  

I made a homework nook, using one of the homemade tables Grandpa made.  Shown with her adjustable chair here, she can start her homework whenever she likes.  It's in the office, with the grown-up desk, and I even put the white noise machine right by the door so Elena can tune out background noise (ahem, Vivian being crazy) while she does her homework.

Homework Nook.  Pictures of E and her Math Coach on her tack board.

The Fall Bucket List is in action!  The kids helped me make a tree with leaves that "fall" every time we do them.  It's going to be a fun season!

We're going to have to add more leaves!

Another recent development is with Elena and one of our neighbors.  Vivian has four close friends within three houses of ours; she always has playmates.  While there are many fourth graders in the neighborhood, none of them are in walking distance to Elena, and that was always a problem.  By chance, our third-grade neighbor K and Elena have begun a friendship--K has several siblings and is often away or at another friends' house.  It has been an awesome change to see E out and about, inside and out, with a nearby friend--without any help from me!

Bonus pictures!

Viv spots a balloon landing

Elena finds a treasure at the Archaeology fair!

Art House

Viv catches the Moon

School Field Trip

I have a lot to catch up on, so this will be brief. I went on Elena's last field trip--it was to the farm belonging to one of E's PE teachers. The plan was for a nature hike (!), and a tour of the farm animals, and to learn about plants and watersheds. Elena's group went first on the nature hike. I tried to hang back, to see how E navigated in a group in difficult terrain.

This is about how far back Elena stays as the group moves. The terrain was difficult; there were flat parts, but it was thick with leaves and branches that you had to step over. Elena fell only once. Interestingly, she didn't choose to start to follow the group until they were at least 15 feet ahead. I wondered if that was why she was always so far behind--but I think a lot of it had to do with the fact that I was there, and she wanted to stay close to me. I had brought the wheelchair and the beach walker--the two best mobility tools we have to handle difficult terrain. Well, they can't handle a farm. The absolute best mobility option for Elena is her crutches. Well, halfway through the hike--at the bottom of a "loop" path, down a hill no less--Elena ran out of energy. I wondered what would help her...my best guess was a seat to rest (which was not an option). I ended up giving her a piggyback ride back. A pack animal (or human) was the next best option out there, save a Segway or a mini-ATV. After a break, she was fine and independent for the rest of the trip. It was very, very educational to see E's dynamic in a group of peers--she tends to stay back for safety (getting knocked over in a huddle)--but starting so late after the group leaves is something we need to work on. E's teacher told me she doesn't do this all the time, so I think it was my presence that kept her back further than usual.

Almost 7 years

Elena will be 7 on April 30th.



I knew I'd be donating her first pair of crutches to the therapy center; what I didn't expect to find in the storage closet was every pair of AFOs she'd ever had. And most of her shoes (not all of them, but the ones that had been specially fit for her--most of these have lifts in the sole, or additions to the inside of the shoe).

E got her first pair of AFOs at 18 months. When she started bearing weight on her feet, her pronation on her right foot was so bad she stood ON her navicular bone--the bony "nub" on the inside of your ankle, and her toes on both feet "clawed out".

These braces--every one shown here--were integral to the mobility she has today. I can't thank Bryan Fuller and Virginia Prosthetics enough.

I don't have the walkers anymore--they've long since moved on to other families--but she's had three of them, the first one was SO TINY. I remember her first time on forearm crutches--she was so scared, and she HATED IT. Now she's on her second set--pink again, of course.

Sometimes I get all choked up thinking about it...

You've come a long way, baby.

An Emotional Week

E went on a school field trip last week. I asked her to tell me about it when I got home from work--she was very, very tired, but managed to tell me she enjoyed the trip, and that she walked the whole time (rough terrain, historic site, lots of grass/cobblestone/steps/etc.). I was happy on both counts.

Then I got a more complete picture.

Without going into too much detail....the terrain was too hard for E. She couldn't keep up with the class, and basically arrived at the end of the talking points at each location. She didn't have a great seating arrangement at lunch, and hardly ate a thing. Her feet fell asleep and hurt on the bus ride home b/c of a different bus carseat.

At that moment, I realized that my hope--no, my expectation, that Elena would need her current mobility devices or less as she gets older--was wrong.

And while it might not be a great device for her last field trip, it's the only choice that makes common sense.

Elena needs access to a wheelchair.

So we got one.

Wee Walk 2011

We try to make the annual UVA Walk for Kids (Children's Hospital Fundraiser) every year. There are always tons of great volunteers for this great cause, and they are really encouraging. Last year, E did the 1/4 mile Wee Walk for the first time EVER. It took her a long time (45 minutes), from start to finish; she was not at all proficient with her crutches, and it was really hot. This year Elena was excited to "run her "marathon" to help babies", as she called it.

We got there a little early, so we played some games--I carried E so she wouldn't get too tired before her big walk.


Beach Ball


Soccer


Then we went back to the shade for some water, and a Team Doodle cheer!


Mommy, Viv and E from Team Doodle


We started off strong. Our goal was to "keep moving", trying not to stop. We did have a few very brief stops along the way, mainly for sips of water.


Viv took off a few times


Almost halfway


Finishing Strong!






Awesome job E!! Not only did she finish her Wee Walk with a personal best time OF 13 MINUTES(!!), but she also had energy for a bounce house afterwards--and managed to run a few steps, several times--and jump afterwards (once) in just her socks!

If you're in C'ville, check for E on the news tonight!
-by popular demand, here is the TV spot--she's just in it at the end.

Children's Hospital Walk For Kids: Holy Smokes!

I found out on a local events board that the Annual UVA Children's Hospital Walk for Kids was today. I knew about that, but they had a "Wee Walk" option. I really didn't pay attention to how long it was; I figured we wouldn't finish anyway. I called about the course--it was smooth, flat, paved, and had water and help available. Hmm.

I asked E this morning if she wanted to go on an exercise walk with me. I said we could be partners, teammates, and see how far we could walk. And that there would be babies and dogs there, and that we would be helping little babies in the hospital by our exercise. She quickly agreed.

Our whole family went. It was H-O-T. 90°F, actually.

We started with the rest of the walkers. E was the only one impaired walking--that I saw, anyway. Everyone was so incredibly supportive. My goal was for E to use one crutch, and hold my hand in the other. We got about 100 feet, to the turn where the Wee Walk started, and there were a few kid games--E stopped to play and she had about had it. She started whining that she wanted to be carried. I wanted to see if I could get her to walk a little farther--just to the shady spot on the grass. We took a few breaks to get there, but she did it. Then she saw everyone across the park finishing the Wee Walk.

"What are they doing?" E asked.
"They are finishing the walk--the course ends over there," I told her, as we sat in the grass. E asked to get up.

"I'm doing it."

"Doing what?" I asked. "Do you want to walk more?"

"YES! I am going to do the whole thing." My eyes got huge. I nodded.

We had about 3/4 of the course remaining. We took breaks often--some were just standing breaks, some were to switch hands, some were to sit down and have water or a goldfish cracker. I let her be in charge--never again did she asked to be carried. There were two ladies who came behind us, and introduced themselves and asked if they could walk with Elena. She took Britney's and Rachel's hand, and kept on going.





SHE DID IT! Jason and I were amazed! The course was 1/4 mile long. Once E decided she was going to do the whole course, it took us ~25 minutes to finish, and a minimum of 10 breaks. GREAT JOB E!

Soccer: E's first day

E had her first day of what we call "soccer camp" last Saturday. I WAS NOT THERE. I was out of town.

The program is for 4-5 year olds, and put on by our local YMCA. Every time I enroll E in a class, I prepare the teachers/instructors well in advance for having someone like Elena. After all, most teachers have not experienced having a disabled child in their classroom. Hopefully, she and the other students will treat each other well and benefit from the exposure. This has been true for most of our experiences.

But, honestly...there are always moments of sadness. You see how different your child is from others. As E has gotten older and more able, we've had a better time dealing with this. The sad times are few, and normally the feelings are over quickly. E is doing so much more these days, it's hard not to be proud of her--even if she is the last one, or the one that needs a lot of help. I think other parents are proud of her too, even though they just met her!

Since I couldn't be at this session, Jason went. Our Helping Hand Cara was there too. I wasn't sure how much help E would need--turns out, she didn't need ANY--she didn't fall ONCE!! E tried all her "soccer moves" with her crutches. I am hoping by the end of "soccer camp" we might be able to do some of the drills without them--maybe. Coach M didn't spend a lot of time catering to Elena. I think that was good. After all, he had 19 other ~4 year olds to try to keep busy and attentive. I know he was watching her, though, and wondering how she would follow along.

Here is E warming up. The other kids were running around, jumping, doing runs as a group. Not only would that be exceedingly hard, E wasn't interested--instead she wanted to just kick the ball. Everyone seemed fine with that.



One of the other kids in the class is Julian; we met him in yoga class! He remembered E. How cute!



Here is Elena trying to keep up with the group. They are supposed to run across the field, get to their ball, and put their foot on it. Then dribble and stop repeatedly. Obviously E is slow, but she sort of kept up. She goes fast by taking large steps with her left leg, and smaller with her right. She does lean on her crutches A LOT on the field. Still, she never fell, and was out there for 45 minutes!! I think she will actually like this drill once she realizes she doesn't have to try to kick the ball as hard as she can EVERY time she kicks it.



Here's another drill, where the kids herd their ball into a net (facing the opposite direction). So, let me get this straight: there's running, dribbling, ball control, turning, and then going back to the group. A pretty tall order. Kids her age can do this, no sweat. Sure, she's slow. And she got frustrated when the ball didn't go the way she wanted. This clip highlights her differences. But...hey, it's not going away. It's REAL LIFE.



I'm not going to lie; I was out of town, worried to death this soccer experience would be a disaster. That E would be falling everywhere, upset, wanting to be like everyone else, crying her face off. She didn't. Jason said it was awesome. She LOVED IT.

That's all I could have hoped for. We can't wait for the next session!

Sans AFOs Featurettes

E spends most of her days with her AFOs and shoes on. So, on some weeknights and/or weekends, we spend time in shoes without AFOs (we call these shoes "sneakers") or barefoot. It's a nice break, and it's good to work/strengthen her muscles that are normally immobilized in her braces.

I've seen some changes, for the better...I think. But to see how far she's come, you have to understand where she started--when Elena started weight-bearing on her feet, she pronated so badly--particularly on her right side--that she was standing ON the ankle (standing on her navicular bone) rather than the sole of her foot. Bracing her has greatly diminished this foot deformity, but due to her pronation and tone, she still has issues called "rockering". (I think I have this right) This is where the arch of the foot is basically broken down, and it's her "default position" due to her tone (knees caving in, legs slightly bent) her center of gravity is over the arch of her foot (instead of in-line over her heels, like you and me). When she's in her sneakers or barefoot, this pronation is easy to see, especially on the right side--right foot caves in, and the rest of the leg follows suit. Still, I think the benefits of ankle strength and overall balance are worth keeping the braces off from time to time.

I asked our orthotist about arch supports for her sneakers. In his opinion, he thought E's rockering situation was so bad that arch supports probably wouldn't help much. But, he said it wouldn't hurt. My guess is it's probably better to have them than not. Still, I don't know how to measure a difference, if they help or not. I guess I'll have to compare pictures/videos of before and after.

So, here are some featurettes of E without AFOs (or arch supports):

Wearing Mommy's Old Tap Shoes (seriously--the insoles of these are completely falling apart--but she did get her heels down to hear the tap! I'm sure it would be more comfortable with socks on, too. She liked the sound, and I think it made a lot of sense to her when I said "heels down to make it tap".



Walking at Mommy's Work with her crutches and sneakers--E moves slower without her AFOs in general. We practiced being "turtles", which worked very well. This clip shows her moving a little faster than she did the majority of the time that day.



She also has started taking more steps at home while barefoot. Normally this is "three and down"--three steps on tiptoe and then falling to her knees. Her gait is very pronounced when barefoot, a high-knee-prancing type of gait, but since trying the tap shoes, she really tries to put her whole foot down from step to step. At last count she can walk 12 steps, which gets her from one side of the room to the other. It's still more of a "controlled fall" at this point, but she is able to navigate a little around objects (ball, toy on the floor) not impale herself on any furniture corners, and she can also slow down while in motion.

PT recap: Slalom

Last week at PT E spent a lot of time moving around. We've adapted her new AFOs (Cascade DAFOs) and I think with one more tweak, they'll be just right. E's gait is can be described as follows: can walk toe-heel, flat-foot, occasionally heel-toe, with the majority of her weight bearing on her left leg. She will take a long stride with the left foot and a small step with the right. Her arms are usually bent, and up around her midsection, and she swings them for momentum. When she is tired, her swing is larger, and her knees and feet will turn toward the midline.
We try to keep her stride SLOW and SMALL, as we are trying to foster good walking habits. She can turn around, but not pivot.

Theresa had set up stools as stepping platforms. E does NOT like this drill, b/c when she steps up or down, with her crutches or the handrail, she tries to muscle her movement through her arms instead of through her feet. Since there are no handholds with the stepstools, she wasn't excited about the task. So, she invented this new game:



There are some more PT videos on The Doodle.

Here is E trying to work on her small stride, as she was tasked to walk down the ramp solo with her crutches. Lookin' good!

PT recap: Bowling and Standing up

This week Theresa had E trying to walk down the ramp with her crutches. She can do this around town, but the decline may not be as steep. One of our goals is for Elena to be able to walk with her crutches up and down hills. She's getting it. First, bowling;



Then, going down to get the balls:



Not too bad!

Later in the session E worked on getting up to standing from the floor--at mat, actually, which probably upped the difficulty. Overall she did well--she looks better than she has in the past. She is able to get the soles of her feet under her rear, shift her weight back, and start to push through the legs to stand up. Pushing all the way up, while maintaining balance, is the biggest challenge right now, as well as standing motionless once all the way up (i.e., not falling forward). This drill was done several times in succession, and she got very frustrated and started standing up quickly (to be done with it) without regard to balance, so she fell right back down (adding to the frustration). This vid is actually at the end of the trials, after she got focused.



Yay E! Practice will make perfect!

Home Highlight Reel: Getting out of the car

Here's two vids of E getting out of her carseat:





We've been doing this since the summer. Having a handicap parking placard helps, as it gives you room to maneuver between cars. I have E do this whenever I can. Getting back in is another story...she has started to climb back in the car, but can't get into the carseat yet. I'll post that attempt

VID HERE

When I get it filmed.

Keep on Movin'

Last weekend, I took E to work with me. She booked it to the Coffee Ladies.



She still prefers to keep her weight on the left side, but we're working on it. Her confidence with the loftstrands is getting pretty good!

PT payoff: local playground

I took E out with a new toy today. I bought her a Kinderbike, b/c I thought she would (eventually) be able to do it. We tried it two different times, about 20 minutes apart. She doesn't really get it yet; she knows to kick her feet out and "walk" them forward, and she knows to sit on the bike seat, but she doesn't know how to do them at the same time. My goal is to start with rolling back and forth, and standing while rocking the bike side to side. I think once the feeling isn't so novel, she'll be able to engage her legs better--right now her inner thighs are too tight for her to move well when she is on the bike.



Her reward for being so patient with me was going to the park. She has to get out of the car (I'll post a vid of that, I keep forgetting) and walk to the park with her crutches. There is a pretty big obstacle from the parking lot to the park, however.

Curbs.

We've been working on going up steps with crutches...SHOWTIME!



She can now navigate a lot of our playground by herself (but one has to stay close in case she falls). E loves to climb, and once we were through the structure and the monkey bars, she wanted to go swing. Here is she trying to get there herself. She is walking on mulch, up a slight hill to the swings.



She can also pump the swing herself to keep moving. Usually she is good at this; today, she really wanted to swing high. Right after this vid, she straightened her legs (and her torso, unfortunately) at the wrong time and nearly fell off the swing (a first).



The last part of our playground trip was the slide. As I've written before, E hasn't been able to stay sitting up while descending a slide--I guess she is so excited she stiffens up. She also does this when she's throwing objects in a sitting position, so we've been working on leaning forward while throwing in ring-sit. I think we are making progress; at the beginning of this slide, she stayed sitting for a little while--more than she ever has.



Great job E!

PT recap: working with her new DAFOs

At PT Theresa had Elena do a lot of her normal exercises wearing with her new DAFOs. I had low expectations, b/c her feet will feel very different, and her shoes are much heavier/bigger b/c to accomodate her new braces she had to go up a full shoe size.

Overall, not too bad. She spent a lot of time doing steps with her loftstrands (not shown) and going up and down the ramp.



Note how far out she puts her crutch when going up the ramp--that's so she can put her weight on her left leg (dominant leg) while doing most of the work.



Here is E walking in her new DAFOs. She might have moved a little better if she wasn't holding something. Still--she made it!

First Day of 4yr Pre-K

Well...I have to admit, I was pretty apprehensive about E moving to a new school this year. Last year she was in the Bright Stars program at another school--it was AMAZING--I cannot say enough fantastic things about the program and the teachers there!

Not all elementary schools offer a pre-K program, which was true for our home district until this fall. This is the first time Stony Point is offering a pre-K program. I was nervous, b/c that means this year the school will be "working out the kinks"--and E was coming from a school that already seems to know what really works. Still, I wanted to look at the positives--E will be going to this school for several years to come, and it would be to her advantage to know her way around and to meet some friends that she'll see from year to year.

Prior to leaving for our beach vacation, we met privately with the principal, her teacher, and the special ed teacher next door (Elena is not in the SpEd class, but she will most likely be using their bathroom most of the time). They were all very nice. I shared some concerns regarding mobility around the school, naptime (she does not do well in a cot), toileting, and seating. They were very receptive. She uses a posterior walker for long distances (from the bus to the classroom, from the classroom to the playground), her crutches for shorter distances (to the bathroom, as needed), and encouraged to walk independently (in the classroom, as desired).

Between myself, the school administration, and the Special Education Bus Driver, we worked out a transportation schedule. Elena has to ride the SpEd bus--regardless of disability--due to her weight, as she must be in a carseat. I imagine she will ride the SpEd bus until she can 1) get on/off the bus independently (those steps are huge!) and 2) can carry her backpack. Jason and I had been talking up the bus ride for a couple of days, and E seemed very excited about school.

Waiting for the bus




NOBODY CRIED! We have received great reports from E this week, including rest time (last year she screamed so horribly at rest time she had to change to half-days). So far, I only have a few concerns, and they are minor, and mostly related to outside play (they are waiting for equipment to arrive, so there isn't much for her to do outside independently) (our in-school PT took care of my concerns in the classroom). I'm trying to be patient and let everyone learn how to best include E in all activities before I become an overbearing parent. :)

Overall we are happy--E likes school, she tells us (at least a little) about her day, and we get good reports.

OF COURSE YOU CAN

E saw this set up for another person at the therapy center. I tried to focus her attention elsewhere, but Teresa educated me by telling us "of course you can".



Emboldened, she saw a dolly pram (it normally isn't out) and went for it. This particular pram is very lightweight, so E can't lean into it to push. This is an issue, b/c she's not that good at independently stopping her forward motion. She tries to stop, but instead just takes smaller steps on her toes.



She went up a rope ladder again and into the sensory swing--see E's YouTube channel, The Doodle for the most recent vids.

E tried a new challenge today--using hanging rings. Takes core strength, coordination, and patience. A little bit of each ain't bad?

PT recap: Same issues, Different Exercise

Here is E working on 1) moving more independently, and 2) trying to move her feet in/out of obstacles--whether that be uneven terrain, swings, ladders, etc.

Every session now she does steps with her crutches. This is to try to practice for school this fall--there is a small set of steps to her classroom. I think it is highly unlikely she will be ready to use her loftstrands at the start of school. We'll probably have to go back to the walker. (Steps vids not here, but are on the YouTube channel).

E gets some choices as to what SHE wants to do during PT; using the swing was one of them--but she didn't realize getting out was part of that program.





some time after that, all learned another type of sit-up.