Tuesday, April 27, 2010

Weekend at Mommy's Work

E came to work with me over the weekend. We did "some science" and did a whole lot of walking around, including steps to use the bathroom down one floor. E was incredible. It was hard to get video of E doing steps, b/c I was so nervous she would fall.

E can do steps pretty well, provided she holds the rail/banister with her right hand. If you change the grip, she has a lot more trouble.

Then we walked down the hallway to the coffee ladies; I told E to try to keep her hands "low" and walk "slowly".

Here's the big one! E's new thing is "running". She ran off and on while we were at work for about two hours!

I also introduced the game "Mother May I". She always asked if she could run from A to B. I let her sometimes, and others I changed her movement to jump, walk sideways, backwards, etc.

She worked so hard this weekend! On Sunday (the running posts) we started off the workday with E in her sneakers sans AFOs and her crutches, and she walked over 400 feet around the research wing. After an experiment, I put on her shoes and AFOs at her request and then shot the running, steps, and Mother May I videos. Her endurance is definitely improving--with enough motivation, I guess!

PT Recap: Steps and Seesaws

Here are some clips from PT this week. Theresa has been challenging E with lots of obstacle courses--but what occurred to me after this weekend is how much better E is at doing steps (no vids shown here). Molly has been doing some different CME exercises with E, but she sees her late on Fridays, when E is tired after a long day. Sometimes E looks great, other times her posture looks really bad, especially when doing a new type of exercise.

I love this next exercise. It's hard for us to do at home, b/c it needs two operators.

Sunday, April 18, 2010


E had her sneakers (shoes sans AFOs) on, by choice, for Saturday early evening. We were out to do some walking, so we went to Target. Here is E walking without AFOs.

NOT BAD!!! This is the front view, so I'm not sure if you can see that she's on her toes. Still, she's composed, happy, and didn't fall (this is the second try; first not filmed). It's also close to 7pm at the time of this clip. Not too shabby!

A Cinderella Story

I took E and her friend H to the Charlottesville Ballet this weekend. We just LOVE them!!

The kids got to have a little "mini" ballet class, watch the Pas De Deux dance between Cinderella and her Prince, and then they drew life-sized paper dolls of themselves, with the idea of decorating their picture like a princess at her royal ball.

Two Ballerinas and the kids talking about dancing, and what the show will be about (E is far left, purple tutu)

I knew E would want to dance with the other girls. I got on stage with all of them, and E held my hand when she needed it, which was pretty often. But what I really enjoyed was how E didn't hesitate to try new things. She is brave. There was a moment when the kids were lining up near the back of the stage (this take a while, herding lots of little girls) and I told Elena to look out from the stage. "There are all these lights, and look, the people out in the audience love to watch you dance!" I said. I meant the "royal you", but E let go of my hand, went to center stage and started dancing. Alone. She shook her midsection, tried to keep her hands out wide sometimes, smiled, and did some turns the best she could. I followed her the best I could in case I had to catch her (I didn't)--but what I really wished is that I could have been in the audience to see that.

E loved the show. The Prince remembered her from the last performance we attended (how cool is that?!). E just calls him "The Prince". I can't wait for her to see him in a supermarket or something. ;) E and H were the last girls to pack up their drawings before we left.

E and H making "life-size paper dolls"

Can't wait for the next show!

Next Up: Surgery, most likely PERCS

I am pretty sure E needs tendon lengthening. She has a very hard time standing fully upright; I think she could do so more easily if she had her contractures surgically lengthened.

I've been thinking about this for a long while, and I think PERCS (Selective Percutaneous Myofascial Lengthening) is the way to go. Our orthopaedic agrees, which sort of surprised me...I thought he'd want to go the traditional lengthening route. Now I need to find the time and doctor. I am pursuing Roy Nuzzo in NJ.

PT Recap: Balance challenges

E has been doing very well in PT. Sometimes she's really ON. Others, well, we know she's not going to really engage. I think that's perfectly typical of a girl E's age.

Here are some highlights:

Theresa had E initiate AND complete weight shifts (shown below). She is holding an egg in an egg spoon; as the session went on, we gave her shallower spoons to see if she could keep them from falling.

I talked to her about "egg races", only we call them an "egg pass" b/c I don't want her thinking she needs to race/hurry.

Here is E trying the egg exchange:

Later on in the week, with Molly; this is just a stretching session, but I loved what E was telling me...

And trying to get E to walk downhill. We tried this later without Molly holding on; Elena can go down most of the way in a controlled manner, but once she thinks she is "at the bottom", she'll lean forward to anything she can reach.

Thursday, April 8, 2010

School of Hard Knocks

Today we had some dear friends over. They are VERY good friends, and the two kids are so sweet to E. They all play together well, and know not to pull or push E b/c she can lose her balance easily. Overall, it's just *easy* b/c everyone knows the situation, and it's just not a big deal.

And then, something happened.

The friends had to leave, so E went to the front door to open it for them (it's her new "trick"). Everyone was saying goodbyes, giving hugs as they were working their way out the door. And then little Vivian joined in, pushing her way to the door--and like dominoes, everyone shifted. E was the one closest to the door, and she tumbled out.

Out the door, down the one step, right onto the cobblestone, hitting her head.

I'm pretty sure she put her hand down, at least a little, to brace herself. It's one of those situations that you can see coming--and that you're *always* worried about, as a parent of a child that is prone to head injuries. But I just wasn't fast enough.

Everyone felt bad, especially Elena--I'm sure it HURT.

It makes for a tough ending to an otherwise great evening. One ice pack and 10 minutes later, E is smiling and laughing again. I wish it wasn't so rough on her. Sometimes, anyway--I don't spend too much time dwelling on it, b/c hey--this is the way it is. And truthfully, E is one tough cookie. She takes a lot of bumps and bruises. I know kids in general do, but it's just different. Accidents happen to everyone. Just more often to E.

I guess it's getting to me tonight.

UPDATE: Elena has fallen 5 times badly--head/neck injuries, this past week. She falls often, yes, but normally has the ability to protect her head/not fall too badly. One of these falls gave her a gash on her ear, and the other she impaled her neck on a bench. Obviously I am concerned. I have spoken to her docs/professionals about this...my first guess was the her shoes were too small (that is NOT the case, yet anyway); the second, was she was ill (her sister had some bug, but E never really manifested much); the third, and most likely case, is that at the end of the day, her endurance is shot and she's just too physically tired to keep up with what she wants to do. I am encouraging her to use her crutches, or take a shoe break, do a puzzle, something that does not involve walking around...

Monday, April 5, 2010

Coming Up: Elena's 5th Birthday (REPOST)

**REPOST--If you already responded, I sent you address information today!

This is just a temporary post.

Elena's 5th birthday is April 30th, 2010. She has been adamant that "when you are 5, you can do everything by yourself". Well, of course, we're all for that--but we are realistically hoping that The Turning Of Five will bring E some new independence.

One thing E LOVES is mail. She doesn't know how to read yet, but it is emerging. She does recognize that some mail has her name on it, and appreciates pictures and notes from kids her age (or from parents of kids her age). We also send mail, although it can be a long wait time, and for that I apologize. We have to start VERY early to get lots of letters out on time.

Would you like to send E a birthday message? If so, contact me at cpmom2009 AT yahoo DOT com (also a link through the About Me portion of the blog). Once we have your address, we tend to send mail at semi-regular intervals (major holidays, etc). I do NOT share addresses with anyone else.

Getting mail from other places also helps us with geography--she knows G lives in Tasmania, W lives in Texas, R lives in Hawaii, for instance (and can find them on a map). If English isn't your best language, don't worry, we'll love it anyway!

For sure...when E is 5, one thing she WILL do by herself is...GET THE MAIL!

PT Recap: Obstacle Courses and Stuff

Just the usual stuff. E is doing well at PT. We need to do more of this at home--finding the time can be a real challenge, though.

I thought E did a particularly good job here--this is her longest sliding session! She seems to stop when she's bored and wants to move on, instead of being tired or unbalanced.

Sunday, April 4, 2010

Easter--including an Indoor/Outdoor Egg Hunt!

Happy Easter!

E and Viv had a great time up at Grandma and Grandpa's house. As usual, E got to play "kitchen" and made food for everyone.

We dyed eggs--or as E says it, "dived eggs", late Saturday evening.

After church, we had an Easter Egg hunt! E has done this before--inside the house. She is very good at it now, and loves the hunt. We try to stress that it isn't a race, and that works well. This year she carried her basket for the first time. She didn't have any problems inside the house (relatively flat, lots of handholds). Vivian joined the hunt, too. She liked the eggs when she found one, but didn't know what to do with it besides shake it.

We also had an outdoor egg hunt!

E did pretty well on the pavement and surrounding areas. There were some eggs through the grass, and that proved too difficult. Granted, the grass was long...but I think even if it were freshly mowed, it would have been too difficult this year. The hardest parts were the edging by the mulch (little "dips" prove troublesome) and the fact that she was carrying a large object. Vivian, on the other hand, loved it--she ADORES being outside, and especially loves tumbling in the grass. Elena likes grass, but not the falling part. :)

Great job, girls!

Lots of Walking!

Here are some highlights from the past week. Elena has been walking up a storm!

Here is E on the playground. There's another, longer clip later in the evening where she falls, gets up, and makes it to her destination (all by herself) on The Doodle YouTube channel.

E walked to her PT appointment. From the car to the door of the therapy center, over (pretty flat) gravel.

And my favorite, E and Mommy at Mommy's work. We're testing out props for her Science Birthday Party. She named herself "Dr. Elena Handy Star Candy". And she walked over 300 feet (not in one stretch), stopping to rest (without holding on to the wall), and occasionally using the wall for support.