Monday, August 31, 2009

PT recap: Shoes-oui. AFOs? NON!

I will be posting over this, with pics/video, but last week E went to PT (Jason took her, as I had to be at work early) and Theresa had E work with her shoes on, but without her braces. Jason said she did pretty well--but, in all honesty, I didn't believe him.

Theresa asked us to find shoes to fit her feet, not to fit her AFOs. We found a cheap sturdy pair at our favorite store. It was a real treat to see her in shoes without braces! And much to my surprise--off she went, a little more unstable than usual, and took 5 steps to the next bench in the store! WOW!

I have heard of kids "outgrowing" the need for their AFOs. I thought this *might* happen for E, after she stops growing, before her twenties or so--and then only for short amounts of time. And just b/c she took some steps without her AFOs on doesn't mean it's happening soon--she can't take more than 3 steps in bare feet--but still, I was AMAZED that she moved as well as she did wearing only sneakers!

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.

Thursday, August 27, 2009

Myrtle Beach 2009

We went to the beach for vacation last week (big thanks to Grandma and Grandpa!). I was really looking forward to the vacation--I needed days off from work, from therapy, from scheduling...and Elena did too. I was a little worried about the beach--after all, that would mean 1) a lot less time in her AFOs and 2) a lot more time being carried (see 1). I kept telling myself-"Elena needs a VACATION--she's earned it" and decided that time off her grueling schedule would not hamper her progress.

The car ride was long...normally it would take us 6.5 hours to get there, but it took us nearly 10. E needed breaks from her carseat, bathroom breaks, and little sister Vivian needed a high chair to eat, so the trip was slow going. Overall both children were angels on the long car ride. We arrived late, and went to the beach the next morning. E was super excited.

We spent a lot of time in the sand. Posture-wise, she spent a lot of time in the w-sit (she can move in and out of it, as well as taylor-sitting). That being said, she also spent a lot of her time on her knees in a high-kneel, so that was good. We did do some drills where we would "bulldoze sand" with our feet, or with our toes, or try to dig in the sand with our toes, so that was a nice drill. We also just had fun, too.

E loved the waves, but it wasn't very easy for the operator. E is longer now than her first trip to the beach; due to her weak core and tight legs, it's like holding a very long, heavy pendulum. She can help by holding on to your neck, and she can even wrap her legs around your waist (a little), but when in waves she is so excited she basically just keeps her toes off any surface to be "swept up" in the feeling of the wave. Great for a kid; painful for the operator's back. I imagine that doesn't change much as she gets older. I spent a lot of our water time reminding E to put her feet down. The pic below is an example of her leg tone when really excited--it's not always this bad. She can put her feet down, but she forgets after a few seconds. I do not think it is a sensory thing about having cold, moving sand/waves on her feet. I think it's just from being excited.

We also did some non-beach activities--fed the ducks, fed the fish and turtles in a pond, rode golf carts, went to a mall, and played mini-golf. I thought mini-golf would be a challenge, but a fun one. After all, she loves playing "golf" at PT (hitting small balls around with a noodle, she's pretty good at it). Well, I was wrong. WRONG WRONG WRONG. We took E in the middle of the day, to avoid the crowd--it was 95 degrees and no shade (oops). She got very frustrated when she could not stand up well when grabbing the club, and then even more upset when she had trouble hitting the ball. We played a 4 holes, the one in the shade--she actually liked that one, but was ready to be done.

There were two huge surprises during the beach vacation. One was at the shopping mall, I took E to the bathroom in the family bathroom and they had a little mini toilet and mini sink. She wanted to do the potty by herself. I helped getting her pants down, but she got up on the potty herself, wiped herself, got down herself, pulled up her clothes (mostly) herself, and washed hands (mostly) herself. WOW. I was AMAZED. If only small toilets were a standard fixture in homes and schools!!

The second surprise was when E was moving around the beach house without her shoes/braces on. Her feet--the right one, in particular, didn't look that bad. She could stand with (mostly) flat feet almost anytime when asked, and spent a lot of time flat without being prompted. She did try to stand without holding on to the furniture, she can reliably do that for a couple of seconds. She also tried to walk without her shoes on, and she could take three steps and fall.

The third surprise was playing our Wii game console. I have heard from other parents that they love the Wii fit and other games--but their kids are older. We played Wii Resort Frisbee. Elena had a great time taking turns "throwing" a frisbee. She didn't know what she was doing (and sometimes we made it work for her) but she was receptive to moving her body to play a computer game, which I think will be a great tool later.

When we got home, bedtime was a bit of an adjustment but our regular program of wearing her AFOs, using her crutches, trying not to be carried as much, and doing exercises/treadmill went back to normal without a hitch. Whew!

Sunday, August 23, 2009

At the pool

We met E's Bright Stars teachers one last time before the start at school. It was a pool play date. I begrudgingly agreed to try a different style of life vest (this one belongs to our main PT). Turns out, this one was a GREAT success! It gave E more confidence in the water. She still has trouble righting herself in the water, but I let go of her for 6-10 seconds and she could stay more-or-less straight up in the water.

One thing I have been working on with E when we "swim" (and at yoga, actually) is E's ability to really stretch out her arms. She can do it when reaching for a toy or coloring, but when her hands are above her head (or when she is in water) she really "shortens up". She also has a hard time relaxing her shoulders, but I don't know how to make her aware of that. Anyway, with the life jacket on and the cue "reach for my belly button", she not only reached her arms out all the way, but she could kick while doing so, which is a pretty big deal.

PT recap: Musical Chairs, Move to Independent Toileting

One of the reasons I've been pushing for E to be more independent with maneuvering her sitting position is for her to be able to use a slide. Another is to have her be able to get in/out of a chair during mealtimes at school. And another--the Big One--is for her to be able to use the toilet independently. The fact that there is a hole in the middle of the toilet seat changes EVERYTHING. I know some of you parents of kids like mine know EXACTLY WHAT I'M TALKING ABOUT!

Anyway--Theresa thought of introducing E to Musical Chairs. It was a GREAT idea! Notice E's positioning when she almost has her feet on the ground when getting off the chair--I think doing bridges every night during our stretching regimen has really helped this motion.

We walked to the bathroom at the therapy center to try to see how E gets on the potty. This one has sidebars; this is the first time she's tried getting on a regular-size toilet seat (and the first time she's had one with sidebars).

We've actually been working on this (when we can--usually we don't have lots of time) since this session. Most of our efforts are for her to try to reach to the toilet paper, tear off some, and wipe herself (there is not much success with any of this yet), then for her to get down from the potty herself (most of the success is here, depending on her confidence) and then pulling her clothes back on (needs heavy assistance for balance at this point, but she gets the idea). The good news is the fundamentals are there, but the toilet size is the big problem. In some shopping malls, they have a "family bathroom"--where there is a miniature potty and sink. She can actually do ALL THAT HERSELF (two times, in two different malls)--it takes a lot of time and contact guarding, but she was SO PROUD of herself (and I was too!)!

Monday, August 17, 2009

Review: Feldenkrais

I had heard of Feldenkrais as a therapeutic activity through one of the newsgroups I belong to; I have to admit, I had low expectations. I figured, if I walked in some place and they started burning incense and ringing bells, I was outta there. I wasn't sure if it was some new-agey hocus-pocus snake-oil miracle cure some crazy was trying to put on me. Still...I figured, well--it's worth a try. It couldn't hurt, right?

I looked up to see if there were any practitioners in my area; there are four. That surprised me. I called a few and left messages, and two called me back. One called me back twice--this is ALWAYS great for me, b/c it means 1) they are interested in my business and 2) frequently I forget to do things, and I like people remembering for me. I made an appointment with the gentleman caller. I also gave Keith this blog as a reference, which he checked out. AND he saw us on TV the night before our visit--bonus!

After entering his workspace I was immediately relieved. I saw lots of familiar tools--foam rollers, all kinds of balls, mats, etc. He was always focused on Elena and how she was moving, and took time to see how E reacted to having him around her space. He gained her trust before trying to move her, touch her feet/back/legs, and Elena had a great time--so great, in fact, that she exclaimed later in the session--"Mr. Keith you are SO COOL".

Keith explained to me what Feldenkrais was about--I'll try to get this right--it's about improving body awareness by helping the client realize how to move in a different way. As opposed to our traditional PT, where we work on strengthening and using weak muscles through repetition, bargaining, and pressure, Feldenkrais is a gentle approach where the client is in charge, and the practitioner (if allowed) will try to show the client a different way to utilize their muscles as they move about freely. Keith ran the session so that when he spoke, he commanded E's attention so that she knew every time he talked it was beneficial to listen. For instance, Keith showed how he controlled a whiffle ball with the bottom of his foot, and asked Elena if she'd like to try. She did, and did it fine on her left foot. The other foot she couldn't do--so he told/showed her that she could use her right foot if she stopped leaning on it (and her right arm) for balance. It's a small nudge of change--but she was very receptive to the message. No magic light bulbs went off, but throughout the session (which was long--about 90 minutes) she did move in a slightly different way, and enjoyed Keith's company and challenges. As an added bonus, he videotaped the entire session--and then sent it to me, completely annotated, for my review. WOW. My husband was impressed with the time, detail, and patience devoted to this session. I will ask if I can cut a clip and post it here.

Am I sold? Not completely. I think it is valuable, definitely. My problem is two-fold: 1) It is expensive. I don't think it's expensive for the work done--I am happy with Keith's work (from my one visit), and especially impressed with his video commentary. It is expensive as another addition to our already pricey therapy/doctor/equipment list. 2) It is time consuming. E's school year starts at the end of this month, and our schedule is already pretty busy. I thought I might be able to commit a small amount of time to Feldenkrais, but I wasn't sure if that would garner any results.

Keith's suggestion is that we try a few visits in rapid succession, if time and money permits. He thinks that would be more beneficial than regular meetings spaced weeks apart. I agree with him. I am happy with our first visit, and I think I should give it a go. Our plan is to see what Elena's school schedule is--when she has a school holiday, we are going to schedule three visits during that week of E's school--one on the day off, one or two where we take her to school late or leave early, and/or ton the weekend (if Keith can swing it).

Overall--very positive experience. If time and money were no object, we'd definitely do this. At this moment, I'm unsure if it is worth changing/substituting Feldenkrais for something else in her current therapy schedule. We'll see.


Wednesday, August 12, 2009

Home Highlight Reel: Walking/Stairs with Delicious

E was moving at a good clip here! Making the rounds before heading upstairs for bedtime:

And up the steps--meh. She's been better.

We've definitely noticed her movements are jerkier/hands are higher/attitude is poorer in the evening, since we've scrapped her midday nap. I expect her endurance to improve gradually. The tradeoff is an easy bedtime. SO WORTH IT.

Tuesday, August 11, 2009

Bday Weekend: Happy E, Cranky Mommy

Last weekend E was invited to A's birthday party. She was so excited, they were all going to Build-A-Bear Workshop and then to a park for the bday picnic. It sounded great! E was very excited about the stuffed animal process. She picked a lamb, and after a lot of jokes from Mommy as to what to name him, she actually insisted on keeping one of the suggestions.

Ch operates the blower while E "air-washes" Delicious

E wanted Delicious to have a baby carrier; I thought it was a fine idea--mainly b/c Elena does not have any backpacks, and she's never tried to move with one. Here goes--note her right heel is up (I'm pretty sure she's out of her shoe there) and that her weight is constantly on her left.

E and M-E at the computers

After the BaBW, the kids met up at one of the parks around town. I've written about how difficult it can be to handle Elena on grass...but this upped the difficulty by adding a "splayground", a sprinkler-splash playground. Uh-oh.

INSERT PICTURE OF PARK HERE (I don't have one yet)

I knew about it--but hadn't ever been there. I didn't know the playground would be a little "downhill"--but she navigated it okay with her crutches (with contact guarding)--but it took a lot out of her (and me, since I have to be rightthere when she's climbing a playground). I brought E's bathing suit, her crutches and her rain boots, hoping that *maybe* she could keep her braces on under the boots around the sprinklers. After I got there...NO WAY. She couldn't wear her braces in the splayground--they'd get soaked, and give her blisters--and she can't use her crutches without her AFOs/shoes. We currently don't have any walkers. Even with holding hands, it would be a challenge, and there were TOO MANY KIDS to just let her crawl around. I had a friend watch E while I surveyed the scene...there was NO WAY to work this playground other than for me to be her permanent attachment. I was very pouty, and I got very wet. Lately, when E is around her peers I have been noticing how similar they act--NOT HERE. It was a shock to me how very different, how very behind E is motor-wise during this part of the party. I left very frustrated, which was NOT my intention. *sigh*

But--the very most important thing, E had a great time. Honestly--never once said how slow she was, or she didn't want me to be around, or that she was always last or everyone had already left for the next activity. So, I must be doing something right. She had a BLAST, and loved seeing everyone at the party. We're thankful to be invited, and so glad that everyone is so nice to E. Happy Bday A!

PT recap: Catching and Chairs

Warm-ups for trying to keep those heels down: walking with downward pressure from the hips (not shown), cues to "smush her heels" (not shown), then the Bounce Catch drills:

I had brought up to Theresa my observations of Elena not being able to isolate her legs while sitting up (the idea of scooting down a slide, while staying up, or getting off a bench without a handhold). A good amount of time was testing her ability to maneuver herself on and off a sitting platform--this one had a place for her to hold onto. She did better than I thought she would. There are more videos of her Chair Trials on The Doodle; here are shown the highlights.

Getting up, transitioning well from climbing to sitting forward:

Theresa showing Elena weight shifts:

E trying these weight shifts (this is the second try):

My hope is that when she realizes how to shift her weight while in a sitting position, she will be better able to differentiate her midsection and her hips/legs while staying in a stable upright position--so she can stay upright while dynamically moving (like going down a slide, or scooting off an elevated flat surface).

We're on TV tonight!

E's blog will be featured on the local news station this evening! Thanks to CBS-19 for featuring us! Here are the video spots.

Monday, August 3, 2009

Big Weekend: Water Country and Busch Gardens

Last weekend we had a big trip. This was a pretty big deal.

We took E to two amusement parks; one per day, with her good friend A. They also got to spend a night in a hotel--a first for E, and they even got to sleep in the same bed! E's first sleepover!!

We went to Water Country USA as our first park. I wasn't sure how that would turn out...E can't swim (like most 4 year olds, though, so that's not a big deal) but she also would be without her shoes on for the entire duration of our time at the park. No AFOs, no shoes, no crutches (she can't really use them yet barefoot)...which either means a lot of floating, or a lot of carrying. Turns out, it was a pretty good day! Even though E isn't the most confident sometimes, she is a thrill-seeker.

Before getting wet

We started on a ride called the Hubba Hubba Highway. It's a "river"-style attraction with a medium current, where you just plop in with or without a life vest (we all wore ours) and float along. There are different styles of jets and sprinklers along the way. It was great fun for everyone--but I noticed something VERY QUICKLY: E cannot right herself in the water while wearing the life vest. We planned on staying together, but literally we needed to be holding her the entire time (or she was holding on to us) b/c otherwise she could not reliably keep her face out of the water. She won't stay "up and down" like the other kids. Not right now, anyway.

Really, any (age/height) appropriate attraction that involved a handhold was fine for E. This means any raft-type of ride, she could do, and loved it--even the fast ones! But any activity that involved no hand holds--slides, a mat-style ride, or straight up swimming was a no-go. We tried her on a small kiddie slide, with Jason helping her start sitting up at the top, and me at the bottom to catch her. At the bottom of the slide, since she was lying down, she slid under the water and got gushed in the eyes, nose and mouth. I caught her the best I could--but slides were a definite NO after that

Here is E on a smaller raft ride.

E "swimming" in the shallows--looking pretty good here.

Overall Water Country was great. Stay close to E, no slides--once we learned that, a fun time was had by all. The highlight (not shown) was when we all got to ride a BIG slide, where all 5 of us got to ride together in one big tube. The girls had a blast, and were pretty exhausted by bedtime.

Mr. Ben reading the girls a bedtime story

The next day we all went to Busch Gardens. Our first stop was to inquire about a Ride Access Pass, where Elena could have the opportunity to go on the rides without waiting in line terribly long. We actually didn't use this too often, but when we did, it really made the experience easier. People who have the RAP wear bracelets on their wrists--one to signify they have "priority access", and the other to inform the ride operator if there is a height restriction (in this case, E wore an orange band b/c she is shorter than 40 inches). This made for very little hassle getting to the front of the line. Everyone was quite nice, no one gave us any fuss, and no one who was waiting in line for an hour made any mean comments. Here are E and A on some rides!

Glider Girls

White Baronesses

At the entrance to DragonLand (a big playground, with some kiddie rides)

On the rope bridge at DragonLand (YES I am very tired!)

Interestingly, they have two large metal slides at DragonLand. I posted above how slides are a problem for E; she really wanted to try these. Jason took off her shoes (to let her slide better), and let her go. Turns out, the slides aren't so slippery; it was more of a inclined tunnel, as everyone had to "scoot" their way to the bottom. E can do that--and it was great exercise for her.

And last, the highlight of the weekend: Das Festhaus!! Ben thought the girls would like the show. That is a GIANT UNDERSTATEMENT--E was so excited, she started stiffening on her bench while clapping and yelling. Seriously, I have not seen her this excited EVER. Not Christmas, not her birthday, not having grandparents visit--Das Festhaus trumped ALL! One of the dancers--a VERY tall, handsome gentleman, came right up to E to see if she wanted to dance. ADORABLE!

ein Gentleman, wie er im Buche steht

One of the last dances was The Chicken Dance. A was very excited--she had been practicing before our trip! E knows the dance too, but has problems with the shimmy part, and when the dance speeds up. Still, she had a FANTASTIC time, I was just tickled to be there to witness it. I know the video is shaky, but hopefully you get the idea.

Thanks to the staff at Water Country, Busch Gardens, and Ben and A for a suPER FUN WEEKEND!

Fun Times at the Albemarle County Fair

E and her friend Oia went to the Albemarle County Fair last week. They had a day with free admission for the elderly/special needs. There weren't many rides open, but there were plenty of animals, lots to see, and a great group of friendly people.

E and a duckling

E and a longhorn

E, Oia, and the Moms

E was thrilled to have new AHS cheerleader friends! Thanks so much to Candace and Jesse!

E and Jesse ride

Oia tries to give E a push on their way to the Ferris Wheel.

They loved it!

Thanks to the AC volunteers and the Fair staff for a great day!


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?