Hodgepodge update, again

Hot and Cold

The weather has been just starting to match the season.  I decided to take the girls out a month (?) ago (this is a catchall update) before the leaves fell off the trees--it was beautiful out, but freezing!!

Beautiful Fall

Running

Hot Cocoa

 The New Playroom

When Elena was learning to walk, she fell "like a tree" all the time.  We decided we needed a "crash room"--so we emptied our dining room, bought the thickest carpet we could find (and put the thickest pad under it), removed any furniture, padded any and all "corners", and gated the sides.  That was our arena before Elena could move about the house safely (roughly, two years).  Now, our entire main floor is littered with kid stuff--Elena has trouble carrying lots of things, so we never stressed cleaning up after herself--and we didn't really stress it with Vivian either.  Now that Elena can navigate the entire house on her own, I decided to move the playroom to the basement and reclaim our dining room (eventually).

I've been working for the last month on the new playroom--cleaning, painting, putting together furniture, etc.  I still need two chairs for the table.  Pictures when they arrive!

Rainy Indoor Day (first days as a stay-at-home Mom!)

It was such a yucky day...so we made the most of it, gross-motor style.  Here are some highlights of our  obstacle courses (Vivian not shown).










More Riding at Fairhunt, with Bonus Vivian!

Elena's riding is improving.  Some of the best cues Susan has given Elena have been referring to her pelvis as "a bowl" and how she doesn't want to "tip the bowl" (less lordotic posture).  Elena is starting to understand what a pelvic tilt means, and this is one (out of two) exercises that maintain that awareness.  She is also posting better.  Starlight a.k.a. "Teacup" is a good pony, but she is very old and will retire soon.

Just like her big sister

Roller Skating!

The local recreation center in town offers free roller skating every Friday night and Sunday evening.  It's wonderful--the staff are so friendly, encouraging, and nice; the other kids (honestly, all of them) have been super nice.  It's full of people falling, not just Elena, which is a refreshing change.

Granted, Elena has a harder time on skates than anyone else I see there.  Still, she enjoys it, and it's a new and different balance challenge--and that's always good, in my opinion.  Elena skates best with two adults (one on each side, normally Jason and I) or one adult if she's doing really well.  She also wears a harness I bought a long time ago (thinking it might help with skiing or bike riding) that has a handle near her back.

We have three goals when E is skating:  1) for her to keep her head up (mainly to keep her butt in line as much as possible), 2) to try to put all four wheels on her right foot on the floor (this is rarely successful) and 3) to keep her feet moving (otherwise she stays on her left foot too long).  I think she is doing beautifully, and she improves every time.  Elena is discouraged when she sees Vivian, now skating by herself; we try to be happy for everyone, and just have fun out there.



We had a really great experience when a little gem of a girl Elena's age skated right up to her as I was lacing up her skates, and she introduced herself and asked about Elena's braces.  Then she said she doesn't like wearing her brace either.  I didn't see one; she said she wears hers all the time when she is not exercising.  I think she was talking about a back brace for scoliosis (I didn't get that far in the conversation, as she and Elena were talking).  It was nice for E to realize other people wear braces, even if it isn't obvious.

Jimmy at the Gym: Obstacle Courses

Well, it's winter here. That means that for practical reasons, Jimmy Time can't be outside. (For those of you who don't know, Jimmy is a student at JMU who has mentored Elena for the past 3-4 months. WE LOVE HIM. Most of their work has been to build confidence while moving/playing outside.) It's cold out now, and bundling E up makes her movements cumbersome--not to mention the colder weather worsens her spasticity.

So I approached our gym (which, I have no time to go to myself these days) and asked them if I could have space inside. I need a big, open space, where E doesn't have a handhold. They were happy to oblige. Jimmy, as her aide, gets in the door for free (granted, only to work with E--but big ups to ACAC gym!). We also have all the gym equipment at our disposal.

So, we've been putting together obstacle courses to see what she could do. We've been doing this for 3 weeks now, and E is AWESOME. I don't have videos of everything, and they are pretty long. It takes E about 3-6 minutes to complete each course. Typically, I make up a story, and have E go through courses to make it through the story. For instance: E is on a quest to Save The Baby. She has to make 5 baby saves (earning a tattoo after each save), and if after she completes them, she is the Queen of the Gym and gets to wear her crown (the one from YOU, MELISSA!).

Here's one vid. Highlights are: successful step-overs, side-stepping, wide-stepping, getting up from the floor, attempt at a crab walk, etc. etc. Other videos have successful jumping, attempts at step-ups/step-downs, cone weaving, etc.



E gets better at this every week. Building confidence, having fun, using practical movement. It's great. And last week, E was sweating!! Guess when that's happened before? NEVER!

PT recap: Good movement

E was great at PT last week. She started it off by pulling a toy into the therapy room. This is a short video--but check out this POSTURE! No AFOs, standing very tall! Note this is NOT E's usual position. Normally her knees are bent, and her right knee slightly caved in (you see this is in the video too). But she CAN stand very, very nicely!



Here is E doing another obstacle course.



And one on an incline--this is a long movie. I am there as a spotter in case E falls. I'm also trying to observe how Theresa helps operate E on an incline/decline--this is something I have not had the courage to try at home. Inclines would certainly be easier if E's tendons weren't so tight!



Theresa ended the session with a few walking drills for E. The object was to stand up, carry a car across the room, STOP, and slowly bring the car to the starting line. Then she was to stand up, walk back to the other car(s), STOP, and repeat with the next cars--a total of three cars, one for each of us for a car race. Elena's main issue here is stopping--she cannot reliably stop her forward walking motion wearing her sneakers without AFOs. She can reliably slow down, as she falls to the floor.



Overall, a very productive morning!

PT Recap: Obstacle Courses

E has been doing a mash-up of CME exercises at PT, rather than just one at a time. For instance, if she will be walking over boxes, instead of placing her on them, she'll start on the floor and have to step up (or down). This has definitely improved her ability to go down steps (she's been going up them well for some time now--with one hand held and one on the rail).

Here is E at PT last week.





E really didn't feel like doing much CME...she'd rather play with the swing on the mat. So we tried to get her to move to it herself. This is a big deal, b/c it involves her stopping, starting, walking, and stepping up in a controlled manner where she doesn't have the support of her AFOs.





It occured to me yesterday that this post contains clips that E has done before, with her AFOs. Each of those clips took FOREVER for E to do, months--years--of training. She's only been working without her AFOs since November. Her progress is incredible. In our experience, this CME therapy has been amazing!