Wednesday, December 29, 2010

Back to Where We Were...Only BETTER

We've been doing PT in her AFOs and shoes since her casts came off on December 10th. Normally, she wears her sneakers only for CME exercises at PT--but her ortho said she'd be too weak in the ankles/calves to do that sort of exercise.

Her AFOs do give her extra stability. She is better able to stay down in her AFOs since her lengthening procedure, and she isn't "teetering" on her toes as much. She can stay standing much better, and her emerging gait pattern (in AFOs and shoes, anyway) is either flat-footed or heel-toe, as opposed to toe-heel(ish) before surgery.

And here's a new one--she's been initiating step-ups (and step-downs) without a handhold. Weight transfer without hand support has been a difficult transition, but she HAS done a step up independently--once--on a 10cm step. So, it's coming, which is very exciting!

But here's another new one--our normal "frog pose"-to-stand, which we do every night at stretches. But NOW, it's slow, controlled, and she can DO IT INDEPENDENTLY, bare-footed!! Right now, she can stand up (and stay there) about 20% of the time bare-footed, and 80% of the time when wearing her shoes and braces. Awesome.

E is more independent and stable than ever. We have started encouraging her to walk barefoot when she can, around the house. She is very hesitant to take her hands off walls, and tends to prefer leaning on objects (furniture, tables) that are low to the ground so she is often bent over while barefoot and upright. We want her to "cruise" while standing up tall; right now the only way this really happens is if I am behind her, walking on my knees, holding her hips. We are a slow pair, and Elena is just getting the idea that when walking barefoot, her standing leg should be straight/tall while her moving leg bends. But, the good news (great news, actually) is that she looks pretty good while she does it. We're a long way from cruising tall or walking barefoot independently, but this is a great start.

Sunday, December 26, 2010

Christmas 2010

Happy Holidays to Everyone out there!

I want to give a super big Merry Christmas to all our Doodle Letter Exchangers--love the pictures in this year's crop of mail!

This holiday season we spent celebrating all December long. Writing letters, making ornaments, tea with Mrs. Claus (Solo Mom Status, with a room full of crazy kids running around and Elena and Vivian in different directions--not my best showing), making a gingerbread house, making Christmas cookies, watching The Nutcracker (or, as Vivian calls it, The Dancing Cracker--the Baryshnikov/Kirkland video edition)--it was a wonderful month of celebration, togetherness, and creativity.

And it was a very busy time, especially regarding Elena. She had a rough patch of moving around post-op/post-casts, but overall, she was a great patient. Between that, Christmas, family, work, and home, there wasn't much time to blog.

Here's some highlights:

Visiting the Clauses (Vivian refused to sit without Nana)

Jason's Holiday Work Party--this is the best picture I got

Sledding after our first snow

E and Viv at the "after nutcracker suite" gathering with the Charlottesville Ballet

E with the Sugar Plum Fairy, The Nutcracker Prince, and Clara

Christmas Morning--E and Viv play nicely (!) together (!!) with the "Dollhouse Castle" from Santa

Viv's Flute--thanks for that loud gift, Grandma and Grandpa

Grandma and Grandpa have better pics, so I'll put them here once I get (find) them.

Monday, December 20, 2010

Walking, Interrupted

I have to admit, I'm frustrated.

I figured E would have some weakness, soreness, and fatigue easier after her surgery/casts were removed. I figured it would last a while, with the worst of it over after a week or so.

I also figured after her STELLAR PT performance the same day as her cast removal, that she'd be sore.

What I didn't expect is that Elena would REFUSE TO MOVE. Refuse to stand up tall. Refuse to walk. WHY?

I figured it was mainly due to soreness that she felt the day after PT. I was nice, sympathetic, and I carried her more often. Five days later, we were barely making any progress. Is this normal? I really wish someone would have prepared me.

E is a lot more verbal/antagonistic toward moving with me than others, particularly Theresa. Still, after she's reached her limit (about ~40 minutes of PT) literally she is DONE. She'll sob, cry, hobble, literally become a cripple after an amazing 40 minutes of movement. I am very confused.

*updated 12/26; she is moving better now, but still reaches her limits before the end of a PT session. After about 30 minutes rest or so (or proper motivation, like a mini-Slurpee or something) she's moving great again. I guess this is fatigue? I'm still not sure. Technically, she's been walking for less than 2 weeks post-casts, so, maybe it's early to be frustrated?

Wednesday, December 15, 2010

2010 Review of New Year's Goals

I wrote a post in January this year regarding what I'd love E to accomplish, in terms of motor function, sociability, and independence. Here's the review:

--E will be completely potty trained. Well, we're still on the mostly part. Mainly due to surgery weakness, at this point. Elena can walk to the bathroom, independently undress and dress (even when wearing a dress), wipe herself, flush the toilet and wash hands and exit the bathroom. I trust her to do this if the bathroom trip only involves pee; a bowel movement may require help. Currently, she gets intense supervision b/c she's still getting used to her "new legs" post-op. Overall, I consider this goal a pass.

--E will make some progress to get her clothes on herself. CHECK. E can dress and undress herself, including socks (we have to pull them all the way on, but at least she gets them on), pants, shirts, some dresses, and jackets. We don't make her to it before school b/c we're pressed for time in the morning, and dressing takes a while. She can undress more quickly than dress.

--E will be able to ambulate barefoot at the pool without scraping the tops of her feet into a bloody mess. CHECK!! We did this last Sunday, at our first pool visit post-op! She looked GREAT. She walked with one crutch and one hand. It took us 10 minutes to actually get all the way across the deck, but she did it, and her feet looked GREAT and FLAT. YAY!

--E will be able to move backwards in some way. We didn't really make progress on this one. I wasn't trying too hard. She can back up when against something, but she could do that for a while. No independent backwards movements--well, maybe a little with her crutches.

--Elena will jump, and get some air under her feet, without holding on to something. CHECK! She jumped AND landed a while back, with her braces and AFOs. Most of the time her jumping is while holding on to something, though.

--E will be able to go up and downstairs herself, with supervision. CHECK. With close supervision (not touching). We haven't worked on this lately due to her lengthening operation, but we'll get back on it once she's stronger.

--Elena will be able to hold hands with a friend and walk a little. CHECK! Last time we did this (that I remember, anyway) was at the Pumpkin Patch with our friends, The Teasters.

And, well...goals for me, not so much...

--Keep up with this blog. CHECK.
--Commit to doing CME exercises with E at home. Once a week, for a good 20+minute session with block equipment. NOPE. I did it for a while, but got lazy.
--Spend some one-on-one time with Vivian. CHECK. Not as much as I want, but, I do get to spend some time with my cute little tornado.
--Try to find some time for myself. HAH. Does soccer count? If so, then CHECK.

I've been working on next year in my head. I think it's going to be a Very Good Year.

Friday, December 10, 2010

Casts Off!

E got her casts off today!

In a nutshell...the results are amazing. Fantastic. INCREDIBLE. No, she's not jumping around or doing the moonwalk--but her range of motion is pretty darn good, and she isn't as weak as I thought she would be after being in casts for three weeks.

Here's a video a half hour before casts are removed:

Waiting for the saw



After her feet were (finally) washed, the doc checked her out and then we all stood there while E walked away with her crutches (and AFOs and shoes). E's feet were DOWN. Solid. I was shocked. I think we all were, a little.

E had a PT appointment a few hours later. The doc said we should keep her AFOs on for PT for a few weeks, b/c he doesn't want too much strain on her ankles until she's a bit stronger. No prob. Theresa sort of "took stock" where E was--and wow, was she impressed. We all were!

Squat-to-stand (very little help here)--E has noticed she doesn't "teeter" as much, as her feet can stay on the ground while she stands up.


Slalom Walking (WOW!)

Walking back to the other room, at the end of PT (HEEL STRIKE!! WOOOOO!)

And then walking to the car with her crutches--HEEL STRIKE, RIGHT AND LEFT!!

I was ELATED. This was just a few hours after getting her casts off...I mean, what will she be like after months of therapy? This is like a brand new start. I feel so strongly that 2011 is OUR YEAR--as in, walking. Carrying a liquid in a cup? Moving backwards? Stepping out of the bathtub? Being able to walk (in any way) at the pool? Getting on the bus herself? Picking up and putting away toys? Hey, maybe even RUNNING. I don't want to get ahead of myself, but seriously, she looks THAT GOOD to me. Such a small change in her structure makes a GIGANTIC difference!!!

Sunday, December 5, 2010

Don't worry Mom...I got this

Well, E's had her casts on for over two weeks--and she's doing awesome. She hardly complains about them, even though I know they are not comfortable. She's using her crutches now, and cruising around the house (ADD VID HERE). She's also taking some independent steps across the room.

She doesn't walk with her right foot "flat"--she never has, really. But sometimes I see the "swing" of her step, where her foot is straight at the knee before she puts her foot on the ground--that's new. I'm trying not to get too excited about it, though...I know there will be weakness post-surgery/post-casting.

And she's a lot more confident every day. I had the both kids on my own a lot last week, at appointments--which was scary, as Vivian doesn't stay with me/listen very well, and E needs close supervision too. Well, I carried Viv and tried to "spot" E as we walked a good 200 feet into a building, on cobblestone, while E used her crutches, and it was freezing outside. I was worried about her; I didn't want her to fall.

"Mom, you take Vivian. I got this."

She sure did, too; she walked the whole way, certain steps (even in her casts), and never teetered. It's been like that since last Wednesday. We're also back to our bedtime routine, and even though E wants me close, she is settling in well to our successful regimen. Things are just great!

This week is huge: E has her eye appointment (we've known she needs a new prescription for months, but we couldn't get in any sooner--and the doc is worth the wait), and she gets her casts off.