Tuesday, August 31, 2010

E's New Bike

I've been looking for the right bike for Elena for a long time now. I kept trying to find a tricycle or ride-on that she could do herself.

We started with this Kettler Trike:

It's a great tricycle. The big problem is that the front wheel is a cruising wheel, so you can push the trike and her feet will just sit there. I wanted her to feel her feet going around so she understood how the trike moves. I called up Kettler, and they would give me the other type of wheel for $50 bucks plus shipping. And, then we got caught up in Vivian's birth, so that sort of stopped.

We got her a different sort of ride-on...the Plasmacar.

It's propelled forward by turning the handwheel back and forth. Elena got it...but it was hard for her to sit up and use her hands unless we were on a polished floor. The vibration of pavement and the tight grip of her hands made her seating arrangement very uncomfortable (b/c her legs would tighten up). She didn't like it.

I tried a Kinderbike. The internet website sales rep was really nice, and even got me a pink one after they had stopped selling them.

Elena took to it like every other kid--she'd stand up and take little steps forward while straddling the bike (not sitting on it). Most kids start this way, too. E could sit on the bike also...but had a lot of trouble with the idea of sitting on an unstable surface--and then moving her feet. She'd shuffle an inch at a time. She got SO FRUSTRATED that she wasn't moving, it turned out to be a disaster. Maybe I tried it too early. We revisited the kinderbike several times, hoping to start over where we left off--but instead, we ended up starting at the beginning--and ending in more frustration. Hmm.

I KNEW there was a bike out there she could use. I wanted her to do it HERSELF. Independence=confidence. Thanks to Elizabeth, I found a bike for E. It's called the Triton Cruiser, and it's a child-sized recumbent tricycle that can grow with E. I saw Elizabeth using this trike--flying on it--and I thought, THIS IS THE ONE.

I know a lot of vendors sell this bike, or one like it. Triton has a pink one, which sealed the deal. I bought it through Toys R Us online, b/c the store agreed that if I brought it to the store (unassembled, in the box) and paid them to assemble it, they would accept a full refund. This was crucial, b/c this bike is expensive, and I couldn't find a single store with a recumbent child trike that E could test drive. After the "toy isle test drive" was successful, I had to modify the pedals so 1) E could comfortably reach them and 2) her feet would stay on them.

I used packing foam, an over-the-commode toilet paper roll holder, and some velcro cable straps (these are my new favorite thing).

I cut off the metal hanger with a hacksaw. Then, I threaded the wheels with the velcro cable straps.

Then I carefully strapped them on so the assembly wouldn't move around under pressure.

Finished product with shoe and AFO as a model.

Here is E in action: First day. I just set the camera on the car, and couldn't see what I was filming--overall, you get the picture of SUCCESS, no?

She was so excited, we went out again the next morning. We brought chalk, and I drew a bunch of destinations, circles--basically things to keep her cycling around. We were here for an hour this morning!

Thursday, August 26, 2010

First Day of Kindergarten

So, how did we do?

We didn't make a big deal out of starting Kindergarten. She's been in public pre-K for 2 years already; AND, most importantly, I didn't want to trigger some inevitable anxiety meltdown about it being too early, or not liking the bus driver, or being shy, or new teacher, or [insert MD excuse here]. So the Night Before Kindergarten was just like any other night. No real issues.

Kindergarten Morning started off with crying in bed after being woken up. E said she was scared...of the bus driver, of being away from home, blah blah blah. I got out of that one by a little cuddling and then asking her if she wanted a white or purple and pink shirt to wear (purple and pink). Breakfast was a bowl full of tears (and some cheerios). I interrupted her weep session by asking her to smile--and I (sort-of) got one!

Then the morning started turning around. We talked about seeing friends again, wearing her new princess backpack. Wearing matching earrings for her outfit. I took E to wait outside for the bus, and look at this cutie!

We had a lot of gear to load on the bus: school supplies, packpack, lunch, crutches, sneakers (for the ride home). That's okay. I introduced myself to the new bus driver (the fact that it wasn't last year's driver was Meltdown-Inducible) and he was friendly. Elena was greeted with chimes of her name when she got on the bus; we have some friends on the same route and they were happy to see her--and I emphatically waved to them, and I swear their smiles were going to burst off their faces. I exited the bus, and kept waving until they drove out of view.

And then wondered about her all day...was she tired? Did she fall? Did she need help in the bathroom? Did anyone tease her? Did she make any new friends? How was navigating the playground? Could she manage the cafeteria?

The school PT called me after noon and told me E was doing GREAT. That was a relief.

I got home from work at about 530p. Everyone was sitting down to dinner. Without prompting, Elena says:


*fist pump* yessssssssssss!

Tuesday, August 24, 2010

First Day of Kindergarten is tomorrow...

Lots of preparation went into this day. I'm spent. I have lots I could write about...like her IEP meeting *the eve of the first day of school* for possible alterations...but I'm just too tired. Suffice it to say I have a (mostly) great team behind me and I have a lot of faith and respect for her educators. This year will be a "growing year"...physically, academically, and psychologically. Elena's self-awareness is coming to fruition and she continually sees herself different from others.

Let's hope she realizes there are lots of similarities, too.

Cross your fingers...it's gonna be a bumpy ride. But we're behind you all the way, Doodle.

Sunday, August 22, 2010

Fan of the Game

Last night we all went out to dinner. A group of young women came in--the Colgate soccer team. E and I got to talking--about soccer and school, and she wanted to ask them a question. So, I stopped one of the ladies and let E ask her question.

"Do you play soccer every day?" E asked. The woman, named Avery, answered they normally play 6 days a week. They talked for a little while, and Avery invited us to come watch her game.

So we did! We dressed up in our best UVA colors (hey--even though we would cheer for Avery, we wanted UVA to win) and I made sure to pack E's best cheering gear--pom poms (we only have pink ones), and our "Go Hoos" banner that our fantastic Nanny Annette gave the girls. It was super hot out, and the stadium is a far cry from the parking lot--so I knew I'd need *the works*--stroller, crutches, packpack, etc. It's a super pain to lug all that stuff...but what other choice do I have, if I want to get E out and about?

Elena loves cheering people on. She loves sports and activity, too. Aside from the heat, it made for a pretty entertaining afternoon. E yelled "Go UVA! Let's go HOOS!" for about 5 minutes nonstop before anything even happened. Two gentleman came up to us 15 minutes after the game started, and told us that they would like to nominate E for the Fan Of The Game. That Fan gets a coupon to a soccer store, and gets to go on the field at halftime and accept a soccer ball autographed by the players!

I figured that E wouldn't last in the heat, even though I tried hard to keep her hydrated. I told her there was another 35 minutes to go before the game was over. She was terse:

"Mom...Real Fans don't leave until the game is over."

Well didn't I just get served!

Tuesday, August 17, 2010

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.

Sunday, August 8, 2010

PT recap: See Saw

This is a late post; I had started it and then got distracted by preparing for kindergarten.

So, without spending too much time on the words, here's some footage of E at PT.

The See-Saw is my favorite CME exercise; I love the weight shifts. I don't like the fact that it takes two operators. Still, E is moving well here!

Part 1 of 3: Double leg raises

Part 2 of 3: Single leg raises, alternating individually

Part 3 of 3: Single leg raises, alternating simultaneously

And after that, E was thirsty, so she took a walk to get a drink. Lookin' good, Doodle!

Pool Swimmage

This isn't her best showing, but here is E swimming by herself in the pool--using her swim vest, of course. Earlier this summer, she could not right herself in the water while wearing the vest. I don't know what made that change--but whatever it is/was, I'm happy about it.

Now we're working toward getting her to get her feet closer to the surface behind her, so she can swim more parallel to the surface. Elena loves to put her face in the water, and seriously wants goggles. I told her we can do that, once we get a little more confident in the water.

*update: In just four more sessions, E can now swim for 40 minutes, and rights herself almost consistently. She can start, stop, turn both directions, and bring her feet in front of her (knees to chest, more or less) and behind her (feet out of the water). Our new plan is to get in the pool once a week! So far, so good!

Beach Walker: Golf Cart Wheels How-To

You may have noticed that in some of the videos, E's Beach Walker has different back wheels. That's b/c my Dad was trying to see what "type" of wheels might work best. Below are shown two types.


When we were at the beach, my Dad said that the wheels he had fit perfectly--but they were on a golf cart (or caddy, I'm not sure of the right term) that he got used, and he hadn't seen that type again. Anyway, here is that cart and the wheel, shown front and back:

In order to mount this wheel to our Beach Model walker, you'll need 4 things: a screw (cut short with a hacksaw--and I don't know the diameter b/c Dad just used one that he already had, that happened to fit into the wheel axle), two washers, and a 1"-to-1 1/2" PVC adapter piece.

1. Put the adapter piece flush with the inner part of the golf cart wheel, with the lip against the wheel (if you reverse this, the wheel won't mount). This part just happens to fit right on this particular wheel just right.

2. Put on the washers--large first, than small.

3. Place the screw through the washers, into the golf cart wheel fitting and turn until tight.

Voila! This adapter piece fits right into the bottom 1 1/2" piece of the Beach Walker. FYI: I have not cemented in the bottom pieces, all shown in the above picture. That way, if E suddenly gets bigger and we need to add a section, or we have to change a wheel, we just take it off. With enough pressure, the bottom wheels stay on just fine without cement.


There is another "standard" golf cart wheel, my Dad says these are what he sees in stores. You can still use them, but they can be a little tricky. All you need for this model is a 1"-to-1 1/2" PVC adapter, and a file. Here is that model, shown front and back:

1. To get this wheel off, all you have to do is flip open the wheel lock (shown open, by Dad's thumb) and it comes right out. (Note: the white PVC part, though shown below, isn't part of the normal golf cart assembly.) The portion that attaches the wheel to the cart looks like a black rectangle with a little jut sticking out on one side (the part that locks the wheel in place).

2. The adapter piece (again, lip-side toward the wheel) fits over this black box. It is an extremely tight fit. Most likely, you'll need to file down the edges of the black rectangle to get it to fit into the PVC adapter. Don't file down too much; you want to file it down just enough so that you can force it into the PVC adapter. Make sure the adapter is facing the right way, b/c once you get it on, it isn't coming off. The best way to force the PVC over the rectangular piece is to hammer a flush "buffer" over the PVC adapter (we used another PVC piece and a washer to get even pressure while hammering--shown below).

hammer assembly: place another piece of PVC, then a washer; turn wheel-side down: hammer away!

Just fit this wheel into the bottom of the Beach Walker as shown in the previous example. These wheels roll extremely well, are very lightweight, and are pretty big. I haven't seen golf cart wheels for sale separate from the golf cart; it could be b/c I'm looking under the wrong search term. Either way, I imagine there's a way to buy these wheels (ahem; cheap) without having to buy the cart. I imagine a pro shop or a secondhand store (craigslist even) may help.

Wednesday, August 4, 2010

Weekend at Pen Park

This past weekend we went to Pen Park. They have two different-sized playgrounds; one for toddlers, and one for the older kids. They are separated by swings (for both babies and older children).

Until last year, Elena only played on the toddler playground--the smaller size made independent navigation more of a reality. Today, she can do the toddler playground almost completely by herself! She can go up the steps (it has a handrail), go over humps and dips (she can hold onto the side of the structure), she can go down the slides. She can get up off the bottom of the slide, and walk around to get on again. I still worry about her falling out of "holes" in the sides--where kids can slide down a pole, for instance--so I don't leave her alone on the structure. The good news about that, though, is the falling danger is true for any of the kids. I also don't trust Elena to climb down a monkey-bar-slat-dome thing...she can go up, but I don't think she can go down safely. Again, typically developing kids may have the same problem.

The big news is, E is now trying to conquer the big kid playground. There's a lot there that she's not tall enough to attempt--pendulum steps (platforms that are high off the ground and tethered by a rope), large hanging structures--but she can go up a rope ladder, climb the steps around the structure, go through tubes and down slides and then start over again.

Here is E getting up from the slide on the big kid playground:

I love it when we visit playgrounds now--because every time we go, she seems to be able to do so much MORE.


When we were done (after an hour of playtime), I asked if she would meet me at the walkpath to the parking lot. I asked if she wanted to walk herself, or with her crutches (we always bring them). She said she wanted to try herself. This is slightly uphill, bumpy grass, with some small sticks and some small rocks near the playground.

Awesome sauce!