Snowy Day

We got another big snow! We were all SO excited to get out and play!

This snow wasn't very good for making a snowman; it was very fine and powdery. Everyone got to go sledding!

Even though this blog is about E, I feel it's necessary to highlight E's little sister, Vivian, here too. Last snow she really didn't get to experience it much.

This was a short excursion...Viv got a faceful of snow and managed to lose her gloves. Crying ensued.


Not sure how much she enjoyed this.


Most of the sledding was with me, but here is E and Jason. Look how E stands up while Daddy brings up the sled!


Our Snowgirls


And the ALMOST GREATEST SNOW VID TO DATE: E sledding by herself! Well...almost. She totally did this hill right before I ran in the house to get Jason to film another attempt. It looks like I set E up to fail, but HONESTLY the previous run (E's first ever with this sled), E sat on this little saucer and held on to the handles the whole way down, including a full spin. She wanted to try it, she DID it, she was SO unbelievably proud of herself (as was I)! So, we tried it again...which is this clip. Undeterred, E wanted to try it again. That ended up much like this clip. Then we went in to warm up.

E's Dance Moves--the Repertoire

Elena loves to dance. Years ago, our goal was to just get her to stand up without falling. Then she moved a little (without falling). We've come a long way since then.

E's newest moves involve "side-stepping", something we've been working on for some time. We've also been working on "twirling", but we're not there yet. Overall her weight shifts are improving, particularly onto the right leg. Her hips are also more square than before, which I believe makes it easier for her to stay upright while in motion. E still has a tendency to hold on to the nearest object and jump around while "dancing"--we're trying to encourage her to try things with her hands free.

Shake it, E!

PT Recap: CME with Molly

We've been doing PT twice a week for about a month now (Theresa and Molly); my original plan was to do this until we got a week-long intensive block of CME in Toronto. Since that is proving difficult, I'm not sure how long we can keep up this schedule. Until then, I'm learning as much as I can to try to challenge E.

Here is Molly doing some new CME exercises with Elena. (There are normally more posted on E's youtube channel, The Doodle.)

The Road--E is supposed to take as few steps as possible. Last week, it took her 11 steps. Here it's 7. Yay!


The Mountain--she did it better the second time, but she still looks good here.


We have CME with Molly at 330 on Fridays...E is pretty tired after school. Still, she is normally in a very cooperative mood and Molly keeps her going. E is such a hard worker!

Sans AFOs Featurettes

E spends most of her days with her AFOs and shoes on. So, on some weeknights and/or weekends, we spend time in shoes without AFOs (we call these shoes "sneakers") or barefoot. It's a nice break, and it's good to work/strengthen her muscles that are normally immobilized in her braces.

I've seen some changes, for the better...I think. But to see how far she's come, you have to understand where she started--when Elena started weight-bearing on her feet, she pronated so badly--particularly on her right side--that she was standing ON the ankle (standing on her navicular bone) rather than the sole of her foot. Bracing her has greatly diminished this foot deformity, but due to her pronation and tone, she still has issues called "rockering". (I think I have this right) This is where the arch of the foot is basically broken down, and it's her "default position" due to her tone (knees caving in, legs slightly bent) her center of gravity is over the arch of her foot (instead of in-line over her heels, like you and me). When she's in her sneakers or barefoot, this pronation is easy to see, especially on the right side--right foot caves in, and the rest of the leg follows suit. Still, I think the benefits of ankle strength and overall balance are worth keeping the braces off from time to time.

I asked our orthotist about arch supports for her sneakers. In his opinion, he thought E's rockering situation was so bad that arch supports probably wouldn't help much. But, he said it wouldn't hurt. My guess is it's probably better to have them than not. Still, I don't know how to measure a difference, if they help or not. I guess I'll have to compare pictures/videos of before and after.

So, here are some featurettes of E without AFOs (or arch supports):

Wearing Mommy's Old Tap Shoes (seriously--the insoles of these are completely falling apart--but she did get her heels down to hear the tap! I'm sure it would be more comfortable with socks on, too. She liked the sound, and I think it made a lot of sense to her when I said "heels down to make it tap".



Walking at Mommy's Work with her crutches and sneakers--E moves slower without her AFOs in general. We practiced being "turtles", which worked very well. This clip shows her moving a little faster than she did the majority of the time that day.



She also has started taking more steps at home while barefoot. Normally this is "three and down"--three steps on tiptoe and then falling to her knees. Her gait is very pronounced when barefoot, a high-knee-prancing type of gait, but since trying the tap shoes, she really tries to put her whole foot down from step to step. At last count she can walk 12 steps, which gets her from one side of the room to the other. It's still more of a "controlled fall" at this point, but she is able to navigate a little around objects (ball, toy on the floor) not impale herself on any furniture corners, and she can also slow down while in motion.

Studio Jam Session

E loves music. She (currently) requests The Beatles (when we're driving in daddy's car) and Colin James (when we're in mommy's car). She's been curious about instruments, so I contacted one of our locals to see if she could observe a rehearsal.

Imagine my surprise when he invited us to his studio! He said he'd love to show E some instruments, and give her an opportunity to play them. E was very excited!

She first wanted to try the piano. She played it with both hands and all fingers. John started to play his trumpet while E was playing, and they both just kept going...it was such a treat to see. None of us--our family--had experienced anything like it. E's interest in the sound and feel of the piano, and John's encouragement was so...organic, natural, flowing. What a special treat!



E tried the trumpet. She got a teeny sound out of the mouthpiece. She kept trying to talk through it, or use it like a kazoo. She was a little dissapointed. Then she got the opportunity to try out the drum set. She definitely likes the loudness of it. I held her so she wouldn't accidentally fall.



E left the session saying, "I want to be a musician when I grow up!"

Thank you so much to John D'earth, for taking time out to share this musical experience with us!

CME report: Changes observed

I thought I would post the minute I thought I was seeing results with CME. We have been doing a few exercises at home, and she has PT twice a week now (but that's only been for two weeks; previously CME was only done 1x/week, and sometimes for only half the session since early December).

One of E's biggest issues is her right hip/knee/heel. She dips her right hip in, her knee caves in, her heel comes up, and normally that's how she comes crashing down.

We've been looking for the right voice cue for keeping her hips square: we've tried "hips", "pockets", and "headlights". Last week Theresa put stickers on her "headlights" (hips). I put the sticker on her left hip way back, so she'd have to square her right hip to see it. Then Theresa did some exercises with E facing the mirror. CLICK!

E's posture has definitely improved, and I think it's the CME. Squat-to-stand on the floor, she can do it (when I am holding her ankles) barely caving her right knee in. When she is standing, if I tell her "headlights" she squares up her hips and is much more stable. She can also take up to 7 steps with sneakers on, without AFOs, at a slow, not-falling pace. She can cruise along the house (one hand on a wall) barefoot, slowly, where she has her feet mostly flat (she walks toe-heel, but her foot is essentially flat for at least part of the stride). When she brushes her teeth on a stool at the sink (at night, she's barefoot) she can have her feet flat, hips square, even when she's leaning over the faucet. That's all pretty new!

Red Light, Green Light

I finally got a film clip of E playing Red Light, Green Light in The Hallway. She is getting much better at her starts and stops. She gets very upset when she falls, as if she's "lost the game". As long as she can get up and do it again, though, she's happy again. She got up twice after falling without assistance, and without hanging on (one of them took more than one try).

This is a short clip, b/c the light in the hallway made it hard to film, and I can't dynamically zoom while filming. If you're interested in seeing a whole hallway clip, try here.

Nighttime Admission Results

I mentioned our issues with E's sleeping a few posts back. Thank you all for your comments--and, as I'm finding out on the newsgroups I belong to, there are LOTS of parents of CP kids that have issues with sleeping or nighttime in general.

Here was what happened during my last post: E was really acting up at night. I had/have no idea why. My opinion is we are/were reinforcing some bad behavior, but didn't/don't know what it was/is. Right before this trial, she got a bout of strep throat (that might explain SOME of the nighttime screaming/tantrums, but not weeks of it!). She was coddled, cuddled, and loved and cared for for about 5 days. Then we tried a week of giving her Benadryl.

We gave her one children's dissolvable tablet at 7pm. We continued with our normal nighttime regimen--bath, stretches, books, bed. She always fell asleep during book time. One night she slept through the night without interruption. 1 night she woke up once, I pressed the blanket to her, and that was all she needed. 4 nights she woke up and needed to be soothed--but it was relatively quick. Another night she had a tantrum (it was near the end of the Benadryl week). Jason was convinced that it was a magic pill. I wasn't--I thought maybe the prior week of coddling made going to bed/sleeping an easier task.

The next week we did sans Benadryl. It was much like the medicated week, only she did wake up every night but we just read her a story and she went back to sleep (or she went potty and then we read a story and she went back to sleep).

So...she goes to bed well, and overall has been doing well when she wakes up, but (she thinks she) needs parental intervention to go back to sleep (she definitely needs help if she has to use the bathroom). We've had one or two tantrums in the past 3 weeks (give or take). Overall I'd say that's pretty good. I am still interested in getting/making a weighted blanket...but right now I'm counting my blessings.

In case you were wondering: Our Nighttime Ritual

Here is a version of the stretches we do with Elena every night. I try very hard to cradle E's instep/arch and give the right support, but it is very hard to do and nearly impossible to film (b/c my body gets in the way of the camera). I apologize for the shakiness...



The end goal would be for E to stretch herself and continue to do so as she gets older (or really get into yoga).

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!

A Great Start to the New Year

Well, here is what E did when she went to work with me today.



Oh...and this too.



And there's more! She did it THREE TIMES, along with a few other semi-successful attempts, as well as walking down some other hallways. This is her longest walk to date. AND, this was AFTER her Feldenkrais session late this morning...she has GOT to be tired. UPDATE: I measured the length of this hallway; the portion that Elena walks is 100 feet. The entire hallway is between 115-120 feet, but E tends to start a little within the entrance and stop before the link exit.

THAT'S MY GIRL!!

After Christmas Party

Two of E's neighbor friends turned 3 right after Christmas. (Happy Bday L and K!) We were invited to their party--E is the only non-walker at this point. A lot of these kids are pretty close, as they play together often or attend the same school/day care/church. They run, chase, roughhouse...things E doesn't do. Still, they are all very nice to her, and E enjoys their company and, so far, doesn't seem to mind that she's not in the chase game or something like that.

Some of the kids were playing with balloons around the room. It was a first for us...a gross-motor activity that E's peers do that now SHE CAN DO TOO! Sure, E falls a lot. But sometimes she didn't! She walked to the balloon, stopped, picked it up, turned around and walked while carrying it, then threw it! She did it several times and really enjoyed herself. Here is one clip, not her best, but I did get it on camera.



Good times, great company, and even some milestones for E. Yay!