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.

Daisy Camping

We had a pretty busy Memorial Day Weekend! Elena's Daisy Troop had a camping day planned. Not all the girls were able (or wanted) to go--after all, they are pretty young, and it was HOT. Like, over 95 degrees HOT. To quote the troop leader: "Relentless Heat". So, maybe not the best camping weather.

And, did I mention CAMPING? The troop had decided on their activities--which included creek wading, hiking, tree climbing--not to mention all the other issues related to being outside (uneven terrain, carrying, heat, fatigue, long distances between handholds, etc). I am also NOT A FAN of camping. My husband is--so off he and E went.

Elena made sure to pack her bag herself (it's the Daisy Way). She was encouraged to carry her own backpack (which was heavy; she did, but Jason was definitely holding some of it up for her, as she was crouching pretty badly under the weight by the time they made it to the campsite). The campsite was relatively flat, but there is a big difference between flooring and grass/gravel/mulch/etc. Elena wore her sneakers (without braces) a lot of the time b/c it was simply SO HOT, her feet were soaking wet and Jason was worried about blistering her feet in her AFOs. Both Jason and I were worried Elena would "wilt" in a short amount of time in the heat. All the Daisies were expected to be friendly, helpful (everyone had a job) and supportive. Erin is an amazing troop leader, so I was hopeful things would go well...but, there were a lot of new obstacles and challenges for Elena.

E's first camping trip. Jason warned me he was NOT taking his phone. So I got zero updates. I didn't necessarily *worry*, but I did want a little information while they were gone...but I had to wait until they got home the following afternoon.


E's first words to me:

"Mom, YOU MISSED OUT!"

E and Daddy looking for firewood


Cleaning up the fire circle


Wading in the creek (wearing water shoes)


Knotting the Dishline


Dinner


Washing Dishes (they had an assembly line)


Walking Across the campground (sneakers, no braces, no crutches, no help)


Setting the breakfast table


Hiking (definitely braces and crutches; she went about 1/4 mile "the way out"; Jason gave her a ride back)


Sample walking distance--from the latrine (blue rectangle in the background) to where E is sitting--no help, sometimes no braces/crutches

First UVA Football Game

I had the opportunity to score two cheap seats to a UVA football game. Elena loves sports, and we'd always talked about going to a game...the Stadium, Cavman, cheerleaders, the Jumbotron, the marching band, treats to eat, THE WORKS. And then I got thinking about it...

It's going to be HOT.

I don't have a close parking space.

Strollers are allowed...but only small ones. I'd have to bring a lot of E's gear.

There are a lot of STEPS in that stadium...steep ones. *gulp*

And, there's only one of me.


The Game Prep:

1) I called parking and transportation. When I was a student at UVA, I had a job with P&T so that's to my advantage. They run an Accessibility Shuttle Bus, and it runs all game. The regular buses only run during peak times--hours before kickoff, close to halftime, and at the end of the game. Cars with handicap placards can park for free in the Accessibility lot (ahem--that's accessible to the Shuttle, not within close distance to the Stadium). It helps that the Accessibility Shuttles are the swankest buses around...and that the woman who drove E's Birthday Bus knew we were coming, and was excited to see us.

2) Found out about our seats. Before I scored the cheap ones, I called the ticket window to see what seats were available for us so that I didn't have to carry E up skinny flights of steps (without a handrail), while carrying the rest of our gear. The lady mentioned some huge price. Then she mentioned she had discount tickets--but they were further up. I lit into her--basically, I have to pay more because my child is disabled. That was NOT okay, since there's no way I could possibly safely have access to that section of seats. I was offered the accessible seats for the same price as the nosebleed section. I told her thanks and I'd think about it. Turns out the tickets I got (my friend has season tickets) were literally up two steps, and the rest of the way was up ramps. PERFECT! The dude watching the stairway even helped me.

3) Our seats also happened to be close to the bathrooms--including a private family sized bathroom.

Going to a sporting event, when it's just me and E, is a tough job. Even though a lot of ball parks/stadiums have ramps, the distance one has to cover is amazingly large. E is a tough girl, but right now, if you gave her all the time in the world, she could have made it to our seats--but it would have taken FOREVER. Realistically, it probably would have taken her at minimum of 40 minutes (at her best pace and endurance level), while I made it pushing her in about 6.

Because I want E to be as independent as possible, I bring as many mobility options as I can. Normally this means a stroller and crutches. I also carry a backpack with water, juice boxes, and snacks. Because we wanted to do it up at the game, I also brought a bunch of pom poms, and our cheer banners. Since I'm not going to leave my daughter unattended, this normally translates into me carrying EVERYTHING AT ONCE if I have to go up stairs. E weighs nearly 30 pounds, and doesn't really help me hold her. It's exhausting. Then do it all again when she has to go to the bathroom, which seemed like every 20 minutes (I did keep her constantly drinking, as it was nearly 90 degrees out).

E Cheering on the Hoos


Too Darn Hot


Halftime "Shade Rally"


E and "Uncle K" cheering to the finish


Did we have a good time? Of course we did!! I just wish getting around was EASIER. Does it get easier?? I certainly hope so...

Busch Garden and Water Country 2010

We had the pleasure of going to BG/WC with our good friends again this year! A and E went together last year, and had a blast. What a difference a year makes! First of all, it was a billion times hotter this year--each day it was close to 100 degrees. Second, both A and E's younger siblings also came, which made for some serious multitasking. Viv and ER didn't seem to like as many attractions as their older siblings, and both tired out quickly in the heat. Still--despite all the work and exhaustion, it was a great trip.

We brought the Beach Walker to Water Country USA. This turned out not to be a good idea. E's Beach Walker is pretty small--any water over a foot deep makes the wheels start to float. So, we ended up lugging it around (not the biggest deal, as we all had giant double strollers and gear) and not really using it. We did get a few people asking us about it, and saw two children with CP (one was much older, navigating the park independently, wearing AFOs and crocs). I saw a few other children with disabilities, but as you know--they're a minority. I feel this difference is strongly accentuated in a place like a water park. Still--I am proud that we're out there, doing our best, having a great time, no matter how challenging it may be.

The best part was the Hubba Hubba Highway. No lines, just ride along with the current. Last year, E couldn't right herself in a life vest (any type). This year--not only could she stay upright, she could doggie paddle across the water and ride along the current with her good friend A. That is a HUGE CHANGE. I still had to stay close--she tipped twice and I helped--but it didn't freak her out.

E and Mommy getting ready to float away

G'ma and Viv--Viv only liked it if you were holding on to her tightly

We rode some rides--E would try to stand in line, with her feet down while we waited. She moved along the line sometimes while holding a handrail, other times I carried her. It was a full-time job, seeing that the kids were safe, having fun, staying fed and hydrated and cool (ish). A pretty tiring day.

The next day we woke up ready for Busch Gardens! We love it. Both families pushed kids in double strollers. Occasionally, the kids (not Elena) got out and walked. That stung--too many hills, too hot, for Elena to do much on her own. We did bring her crutches, and she did use them. Elena is an adventure-seeker--she LOVES rides, even scary ones. She rode her first roller coaster in the Sesame play area. WOW did she like that!

As always--the highlight of BG was The Festhaus!! Vivian went bananas when the band came out...



E danced a lot too--but I only have pictures. She liked to have a "launching point" from a bench--she'd dance around and then come back to the bench and do it again.



Here is E doing the Chicken Dance! Last year I had to hold her up. This year, she did everything!



Viv also had her first "big girl ride". She didn't really enjoy the rides (not even the carousel!), she preferred to play on playgrounds and watch shows.



Elena loves them, though. Grandma, not so much. E loves the "scream" part when you're up high.



Here's the group, near the end of our day, around "Italy".




What a great time. A big special thanks to our friends, the Rs. Thank you so much for your fun company! A big thank you to Mr. Ben, since he did most of the planning for this trip. And another big ups to Grandma and Grandpa--I literally could not have done this without you.

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.

YMCA Day

Last weekend it was an amazingly hot 95°F. Whew that's hot!

The local YMCA had its First Annual YMCA Day--a sort of "field day", at no charge--complete with games, sports demos, a raffle, fun runs, bounce house, playgym (on a bus), and free food and information about living a healthy lifestyle with your kids. It was a great idea--I love our YMCA! I've talked with them several times regarding activities for kids, and they've been very welcoming to Elena. While I'm really happy we went--E was the only physically impaired child there. I'm not going to kid myself--hey, I know statistics, but I hate it when they stare me in the face. Some days are harder than others. *ahem* MOVING ON--

We arrive to the site--it's on a high school track field. I decided to carry E rather than use the stroller (BAD IDEA)--she did walk some, but I didn't want her to be too tired once we got to the track. Once we got there, our first stop was the Tumblebus--an old school bus outfitted with all sorts of climbing/jumping/play equipment. It was air conditioned (albeit, not well) and it was full of kids. Everyone was great.

Then we went to the bounce house...no one was in it. My kind of bounce house time! Then I took E on a big inflatable slide--I really think she could have gotten to the top by herself, but not with an army of 10-yr olds waiting for her to get to the top. I also have my doubts that she could have descended the slide without injury or uncomfortable twisting--so we went together.

Did I mention it was HOT!??

The local fire department was there with one of their engines. So, they helped everyone cool off!

They hooked up the fire hoses, put the ladder all the way up, and created a sprinkler! The kids went NUTS. Elena joined in a crazy mess of wet kids (with her crutches, me right by her side). I told her I wanted to get "sprinkled, not soaked"--well, you can imagine how that went. We were both giggly waterlogged messes after that. That's E's first sprinkler experience...not going to top that one! Unless the fire truck was PINK, I guess.


We went to check out the firetruck, and Fireman Todd took E on a personalized tour!

Summertime Goals

We had the pleasure of enjoying a sunny Memorial Day weekend with Nana and PopPop in town. We spent a lot of it outside, which is a new thing for us.

Last year, Elena could NOT navigate grass. At this time, E can navigate most surfaces (grass, gravel, large stones, wet surfaces, dirt, small roots, mulch) using her loftstrands, depending on her energy level for a given amount of time/distance. She can travel all these surfaces, on a mild incline or decline, about 100 ft before she needs a break.

That's a big improvement from last year, which is super fantastic!

This past weekend, though...we found another obstacle to being outside.

HEAT.

Since E's exposure outside was limited due to terrain, we never thought about how the summer heat would sap her energy. We even signed her up for a week-long day camp right when school lets out--thinking how she'd LOVE being outside, and would love to be around friends. Then we went to visit. The staff was great, the terrain very difficult--but the biggest issue out there for her endurance isn't just terrain. It wasn't even hot out yet, and she was d-o-n-e after 45 minutes (the camp isn't air-conditioned). We went to a park today, where she was in a stroller most of the afternoon, used her crutches for 50 paces, and walked maybe another hundred feet in total--and she looked terrible. Her gait was distorted, she dragged, her limbs heavy from exhaustion. The temperature high was 88°F, and we were out for no more than 4 hours, half of it in shade, and E was well-hydrated. As a comparison, Vivian (18 months) ran all over the place, the entire time, red-faced but energetic.

This is good information. I don't feel disappointed--but I DO feel like I've learned something very important (besides the fact that E isn't ready for day camp).

Our Summertime Goal (in a nutshell): For E to spend more time 1) playing outside, 2) playing with other kids WHILE building confidence and strength.