C-MoR weekend

This weekend, our Fantastic Nanny Annette and I took the girls to the Children's Museum of Richmond. I knew it would get crazy crowded, so we got there right when it opened. Here are some highlights.

Viv on the Dinosaur


Elena working the Apple Tree (note; she has to start walking with her right and left, respectively, in the videos below)





Going down steps in the Treehouse. She wants one hand on the railing, and one hand held; I refused to hold her hand, as the steps were relatively small. I love the way her foot is mostly straight when she goes down--that was a LONG TIME COMING!



In this vid, her hand is too high when going down the second step. She still isn't confident to move her hand to the right place each time when doing steps, up or down. She'll get there!



We broke for lunch, and came back to play for a while. The place was PACKED by that time. There were a lot of kids asking Elena questions about her crutches/braces, and staring. None were mean; actually, some were quite nice. But E got tired of the questions. She stopped answering them. At one point, we were waiting for a Magic Show to start. We were sitting on the ground, waiting patiently (unlike some other kids). One very nice boy asked Elena "what happened to your legs?", in a very nice, curious tone.

"NOTHING."

WHOAH. I mean, my eyes got huge and I sat up straighter--E's tone was FINAL. That kid has a serious tone of voice!! The boy snapped right back around, almost scared to look at us. E's response was unexpected. But, in a way, I'm really proud of her, for letting people know that sometimes, it's not okay to ask questions. I was just a little shocked, that's all.

Overall, a great day, lots of great movement, and TONS of fun!!

PT Recap: Same stuff, with progress

Here's some new vids of E at PT:

Obstacle Course: E needs to take small, controlled steps and then go uphill.


Obstacle Course: Down steps (going for step-through), and slalom.


Moving Backwards: Real progress here!


Walking on Mats/Stop: Controlled stepping over uneven surfaces and co-contraction to stop.


Even Hips: We're trying to get Elena to equalize her hip stance when standing or walking. Here she needs to lift up the hip/leg that isn't on the platform.


Stepping Backwards: Using a ball helps stabilize E, but also helps her realize to stand up tall while moving backwards (otherwise the ball is left behind).

The Summer of No Carrying

I have several Ambitious Summer plans...one of them is to stop carrying Elena. In all honesty, we do it often, in certain situations--steps and stairs being the most common ones. We live in a three story house, and the steps outside do not have a handrail.

During the school year, we have been in a rush, and Elena is NOT a morning person. We would have had to wake her up a minimum of 30 minutes early to attempt to have her do all her step/stair transitions herself. Quite simply, that was not a good option.

Well, since we don't have to rush to get to a bus anymore--now's the time. The Summer of No Carrying means when the people involve Jason or myself, Elena will NOT be carried AT ALL (ideally other caregivers will do the same, but I'm not going to insist on that). No matter how tired she is, no matter the weather, no matter the footwear--Elena will move her own feet to get from point A to point B. She can hold hands, use crutches, use rails, etc. but she must move her own feet (or scoot, or crawl, depending on the situation). I typically bank in an extra 30 minutes for "getting out of the house" time, if E is going to do all the transitions herself.

I sort of sprung this on her yesterday. We had talked about it before, but in the rush of kindergarten "graduation", she forgot that being a First Grader meant we instituted the No Carrying Act. Today (day after the last day of school) was our first day.

She went down the steps in the morning herself--scooted down on her bottom (which is fine) to play before the rest of us got downstairs. We went out for a morning activity, and she held one hand and used one crutch to go down the steps outside. When coming home, she opted to go through the basement as the steps have a handrail, and opted for the other hand held. We had a flash thunderstorm before Feldenkrais today, and again she opted to go through the basement, one hand held and then got to the car herself (flat concrete). One hand held and one crutch used as we crossed the street. Same thing on the way home. Going to bed, there was some whining about how she didn't like the No Carrying Situation (I have always carried her up the stairs to bed) but she didn't complain long, and we just went up for bedtime.

I noticed immediately that after just one day, her weight transfer going up the stairs has improved--she leans forward more and pushes more with her legs (rather than pulling herself up with her arms). Practice makes perfect, no?

It'll be a challenge for Elena, both mentally and physically to adjust to this. I LOVE IT. It is MUCH easier on me to hold her hand than to carry her--she's not necessarily heavy, but she is long and her tone makes it awkward to comfortably hold her weight when doing stairs.

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.

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!

A Beautiful Weekend, So Many Ways

E has been ON FIRE these days--walking up a storm! We started the weekend with a Saturday trip to Crozet for a Fancy Nancy party at the library. E's friend A joined us!

E and A with their fancy Plume pencils



After that we went back to A's house for lunch and a playdate. A's mom and I got to chatting, when we both noticed the house was strangely quiet. All the kids were upstairs--we caught E more than halfway up the steps! That was a close one...E cannot (or, has not yet) been able to do the stairs at our house independently (while standing up and ascending, anyway--she can "crawl" up them). E had gone up the stairs at A's house all by herself, standing the whole way (at least, that's what she told me). The difference is 1) they have a wall banister, while we have vertical rails that E holds, and 2) the banister is on the right side, while ours is on the left. On one hand, I am really proud of Elena for being so independent. On the other, I am extremely thankful her stair adventure didn't end poorly.

After A's house, we went home to rest. We had dinner guests over, some friends from college who have a 20-month old son J. J and Viv had so much fun running around outside after dinner--and E even did some, too! She walked on our grass (which admittedly is a little tall right now) 18 steps! That's a new record! The three kids played all around the little swingset and got nice and tired. I think (and hope) E will continue to be more independent outside.

On Sunday, E and I went to yoga--she is really doing much better standing during class. She still needs support to stand, but I need to support her much less than I used to. I like yoga b/c it helps us to incorporate large, purposeful arm movements--we spend all our time on her legs, her upper body largely gets ignored. In general, E's arm movements are contracted--she doesn't usually extend them all the way up or out (she can, though).

After my soccer game, Jason met me at the park with the kids. E used the swing for a while, then went to the playset--she took 34 steps, on mulch, independently, and got there herself! I filmed it, but had to race over when she started to approach a fall hazard. Here's the clip anyway, to give you an idea of the terrain and how she looks while walking--sorry for the interruption!



Wowza!

After going to home to rest, we headed over to a special attraction--a free carousel, set up for a week on our local pedestrian mall. The kids loved it (especially Vivian).

New Year's Goals

I have to write "Goals" instead of "Resolutions", b/c that's really what they are. Here is what I've come up with for E this year--some of this has been discussed with her therapists, some of it is my own design. In no particular order:

--E will be completely potty trained. We are really making some great progress on this. E can use a standard potty without extra equipment entirely by herself, as long as she is wearing knit pants and her shoes with AFOs. She can undress, get on the toilet, wipe herself (I only trust her to do this with urine, though), dress herself, flush, and then walk to the sink to wash hands. Right now, I say outside an open door while she goes potty (just in case she runs into trouble, or she needs a voice cue). She needs more instruction on how to wipe herself after a bowel movement, and how to undress/dress herself when wearing something other than pants.

--E will make some progress to get her clothes on herself--including socks and pants. Right now, E can undress herself completely if she is wearing anything but tights. We have not worked on dressing herself at all, with the exception of putting on her jacket.

--E will be able to ambulate barefoot at the pool without scraping the tops of her feet into a bloody mess. I don't care if she uses her crutches, or walks with a hand held--just the difference of not injuring herself is a huge win. Our dorsiflexion drills and using her sneakers at home and during CME exercises (without braces) are helping this effort.

--E will be able to move backwards in some way. I tried this a while ago, asked E to take a few steps backwards. She did pretty well--she did three steps in place. Backwards is a whole different game.

--Elena will jump, and get some air under her feet, without holding on to something. Even if it's a millimeter. She can almost do this, her confidence and desire is there. I didn't say she would stay upright afterwards, though.

--E will be able to go up and downstairs herself, with supervision. E can do this with one hand on a standard railing and the other hand held. I'd love to be able to just be next to her without her hand holding mine in a death grip.

--Elena will be able to hold hands with a friend and walk a little. Normally if another little person tries to hold E's hand while they move around, they both end up on the floor. E's balance is getting better, so she might be better equipped to deal with being tethered to someone her own size.

And Resolutions for me:

--Keep up with this blog. Especially reach out to those who have supported me by reading it. Thank you.

--Commit to doing CME exercises with E at home. Once a week, for a good 20+minute session with block equipment; certain exercises a minimum of 4 days a week (ideally every day, but I'm being realistic).

--Spend some one-on-one time with Vivian. I spend A LOT of time and effort on Elena, and I think that is important...but I want Viv to know she is equally loved and cherished.

--Try to find some time for myself. I know all you parents out there are like, OF COURSE, if only that were so easy. HA!

Will the Real Doodle Please Stand Up

E was awesome at PT yesterday!

We did a lot, but here's the highlights. We've been working a lot on getting E to SLOW DOWN, so she can better control her movements. Here is Theresa trying to get Elena to stand up, walk, STOP, and step down.



E has also been doing some great walking (FYI, she's in her current--purple--AFOs here). We have a goal of E walking 100 feet, with distant supervision. This supervision isn't so distant, but E looks pretty confident, and she turned this corner very well.



And now, for the BIGGIE of the day...E stands up! We've been working on this for SUCH a long time now. She can stand up from the floor, without assistance, maybe 25% of the time. But she can do it. Practice, practice, practice!



Elena we are so proud of you!!

PT payoff: local playground

I took E out with a new toy today. I bought her a Kinderbike, b/c I thought she would (eventually) be able to do it. We tried it two different times, about 20 minutes apart. She doesn't really get it yet; she knows to kick her feet out and "walk" them forward, and she knows to sit on the bike seat, but she doesn't know how to do them at the same time. My goal is to start with rolling back and forth, and standing while rocking the bike side to side. I think once the feeling isn't so novel, she'll be able to engage her legs better--right now her inner thighs are too tight for her to move well when she is on the bike.



Her reward for being so patient with me was going to the park. She has to get out of the car (I'll post a vid of that, I keep forgetting) and walk to the park with her crutches. There is a pretty big obstacle from the parking lot to the park, however.

Curbs.

We've been working on going up steps with crutches...SHOWTIME!



She can now navigate a lot of our playground by herself (but one has to stay close in case she falls). E loves to climb, and once we were through the structure and the monkey bars, she wanted to go swing. Here is she trying to get there herself. She is walking on mulch, up a slight hill to the swings.



She can also pump the swing herself to keep moving. Usually she is good at this; today, she really wanted to swing high. Right after this vid, she straightened her legs (and her torso, unfortunately) at the wrong time and nearly fell off the swing (a first).



The last part of our playground trip was the slide. As I've written before, E hasn't been able to stay sitting up while descending a slide--I guess she is so excited she stiffens up. She also does this when she's throwing objects in a sitting position, so we've been working on leaning forward while throwing in ring-sit. I think we are making progress; at the beginning of this slide, she stayed sitting for a little while--more than she ever has.



Great job E!

PT recap: working with her new DAFOs

At PT Theresa had Elena do a lot of her normal exercises wearing with her new DAFOs. I had low expectations, b/c her feet will feel very different, and her shoes are much heavier/bigger b/c to accomodate her new braces she had to go up a full shoe size.

Overall, not too bad. She spent a lot of time doing steps with her loftstrands (not shown) and going up and down the ramp.



Note how far out she puts her crutch when going up the ramp--that's so she can put her weight on her left leg (dominant leg) while doing most of the work.



Here is E walking in her new DAFOs. She might have moved a little better if she wasn't holding something. Still--she made it!

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.

PT recap: Power of the Tutu

E wore her puffy tutu last week to PT. She spent a lot of the time working on controlling her movements while walking--start, stop, stepping up, and down.



Her movement on the mat was really great! We are starting to see her "stop" and "start" in normal settings. Very exciting!

NOVA weekend

This weekend we went to Grandma and Grandpa's house. We went to the Smithsonian and the American History Museum. E's favorite part was the "bugs" (insect zoo).

On the way there, she walked through the bones exhibit--not too bad! She has been doing very well walking 10+ feet while having to navigate around people (including stop/start, 90 degree turns, without falling or holding on to strangers).



BUG PIC



Even though it was late, she did a lot of walking and playing around the interactive children's section of the American History museum, including navigating a room of playing kids and not falling! (No vids or pics though.)

The next day, we took E to a playground. She loves a challenge. Steps are not her favorite, though...



She played with some boys on their "Pirate Ship"--she was the captain!



Abandon ship! I want to take this same pic in another year or two...maybe E can climb out of there like those two boys. Right now it's just a dream...a cute, bittersweet picture.



Up the "Castle Ramp"--it's a ramp with little wooden planks (not steps, more like a texturized ramp).



My FAVORITE!! E walks on PEBBLES! This was the 4th time. The first two were better (10+ steps, no falling) but I did get this one on video.



There were also other great opportunities--web ladder, suspended balance beam, rope bridge--but I was on assisting duty so I don't have footage. Overall though, E does well with heavy assistance on a playground like this. It's very challenging for her, and she has a great time!