E's sister Vivian was born just before Halloween last year; we called her "La Pumpkina". Elena has gone to Belvedere Plantation for their Pumpkin Patch for the past 2 years--it is THE BEST! Even years ago, when Elena was not as mobile as she is now, there is so much for her to do...it keeps on getting better, every year. Pumpkins, picture opportunities, corn mazes, face painting, little ride-on tractors, haystacks to climb, slides, ziplines, pig races, tractor train, hayrides, petting zoo...the list goes on and on! This year our friend Oia (who also has cerebral palsy) and her family came with us. We brought our wagon and E's crutches--she mostly rode in the wagon, as the terrain is "extreme" (hills, valleys, rocks, hay, etc.) but she did a fair amount of walking and climbing.
E and Viv arrive at Belvedere Plantation
Our Family
E and Oia at the top of the haybale
E's on top of the World!
Daddy and Vivo in the Pebblebox
My two little Pumpkinas
E on the Zipline
Viv on the Zipline
E, Viv (and I), Oia (and Aunt B) on the Tractor Train
E, Mo, and Oia on the way to the Pig Races
Hayriding to the Pumpkin Patch
E, Oia, and their pumpkins--Viv is losing interest
Hours at the Plantation makes very tired kids...overall, the girls were really well behaved. Viv started losing it at the end of our stay, so E kept her busy--being a great big sister the whole time!
Now all we have to do is find time to carve those pumpkins!
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!
This is ALWAYS a struggle...trying to get a new pair of AFOs to work when E grows out of her old pair.
So, here is my current dilemma: basically, we got her new pair, but for lots of reasons, I don't like them. We're trying out the DAFO model. E's previous pair are made of very hard plastic and have some interesting straps to keep her feet down (especially her right foot)--but they work very well. I'm putting together my best side-by-side comparison, to try to convince myself (and everyone else) that I am not crazy.
The Model: DAFO (new, pink) vs. AFO (current, purple) (this took forever to put together! Sorry the details are so small!)
As you can probably tell from the previous posts, E has issues with standing up straight and putting her feet flat. Why on Earth would you create a brace at an angle that promotes her stance in a crouch position?! E has to fight the DAFO to stay upright. The DAFO inner plastic is soft, so it is more "comfortable" but it also allows her to wiggle out of the shoe, no matter how tight you make those velcro straps. And I have put them on TIGHT. Her old AFOs are very rigid, but with the ingenious inner strap she really stays down in the brace. The same strap does put a lot of pressure on the top of her ankle, but she normally does not complain about it, and with a nice tongue to dissipate the pressure, we haven't had any problems (aside from growing out of these braces).
The Motion: DAFO (new; top vid) vs. AFO (current; bottom vid)
Tonight, I tried very hard to get E to move in both sets of braces for a comparison. She didn't want to cooperate, so this footage was shot after a long evening of bargaining. She's not at her best here. Her new braces (and shoes) are bigger and heavier than her old pair (that's always true) so she typically drags for a while. Still, I think she drags both feet, and spends more time with her knees bent (especially the right) with the DAFOs. AND, after less than 10 minutes of being upright, E is out of both the left and right DAFOs by .5 and 1.5 cm, respectively. After 10 minutes with her AFOs, she's out of the right by about .5 cm, and totally in the left one.
The Pros and Cons: DAFO vs. AFO DAFO (new, pink): Pros--easier for school staff to understand how to take on and off, dissipates pressure well with soft plastic Cons--heels slip out, braces are bulky and harder to fit in sneakers, badly hinged, encourages crouch (?), heavy AFO (current, purple): Pros--light, holds E in well, fits in shoes relatively easily Cons--difficult to put on, straps and velcro easily wear and tear
E LOVES mail. Doesn't everyone? But how many people actually send snail mail these days?
Is anyone interested out there in a mail exchange? I'm aiming for Christmas time here, but really it can be anytime before the New Year. Elena can (help) write a letter, to you or your child, and get a letter in return. No gifts, just a nice letter, maybe a picture.
If you are interested, please email me (cpmom2009@yahoo.com) with the following information:
Your name (and/or child's name) You address (in full, including country) How long mail will take to arrive from Virginia, United States (if you know) What holidays you celebrate, if any, near the end of this year Primary language (don't worry if it's not English! We'll try!)
I will not share your email information OR addresses with anyone without your permission. As of right now, this exchange is between E and you. If you are interested in a larger exchange, where your information is shared with other interested parties, please note that--if there is enough interest I'll email everyone privately, and we'll go from there.
This week Theresa had E trying to walk down the ramp with her crutches. She can do this around town, but the decline may not be as steep. One of our goals is for Elena to be able to walk with her crutches up and down hills. She's getting it. First, bowling;
Then, going down to get the balls:
Not too bad!
Later in the session E worked on getting up to standing from the floor--at mat, actually, which probably upped the difficulty. Overall she did well--she looks better than she has in the past. She is able to get the soles of her feet under her rear, shift her weight back, and start to push through the legs to stand up. Pushing all the way up, while maintaining balance, is the biggest challenge right now, as well as standing motionless once all the way up (i.e., not falling forward). This drill was done several times in succession, and she got very frustrated and started standing up quickly (to be done with it) without regard to balance, so she fell right back down (adding to the frustration). This vid is actually at the end of the trials, after she got focused.
What a great city! I went to Chi-town to watch my sister run the marathon--AWESOME! And the kids loved the marathon paraphenalia I brought home.
E says she wants to run like Aunt Kate. I tell her she has to walk first! Still...one dream I have is that I run a little "race" around town, like a 5K or 10K, and E finishes the last 10 feet or so with me. Ideally she'd move independently--but even on her crutches, it would be GREAT. We'll work on that for next year! Maybe her birthday (April 30)?
We've been doing this since the summer. Having a handicap parking placard helps, as it gives you room to maneuver between cars. I have E do this whenever I can. Getting back in is another story...she has started to climb back in the car, but can't get into the carseat yet. I'll post that attempt
At PT last week we worked a little without E's AFOs on. Sometimes this is a nice break, as it's a new challenge for her, and it keeps PT fresh. We're still trying to get Elena to understand that we want her feet flat when she steps. Reminding her about it (her right foot, especially) is like a broken record. Still, when given a voice cue, she does it.
When she's on Shoe Breaks at home, she's recently started taking some steps (maybe 3-5) to get somewhere. Walking barefoot is a very new thing for E (normally she crawls). She is completely on her toes when she does this. Still, she's never done it before..so we have to start somewhere!
One of my biggest issues right now with E's walking is since she can ambulate in some way to get from A to B, she isn't interested in doing it "better". She wants to do it her way, b/c she knows she can do it, and she's fast. I think this will be an issue, with many things, for many years to come...
As I posted before, there will be a CME certification course here in Charlottesville. This is a big deal, as there are very few providers in the United States. The course is for therapists to obtain a CME level 1 certification. Parents who would like their child to be a model are welcome--it will be free of charge (for parents; therapists pay for the certification course). The dates are November 30th to December 4th.
If you are not familiar with CME, go to Ramon Cuevas's website. I think this approach is fantastic. It really speaks to me, I think it makes sense to promote balance and movements this way.
Please TELL YOUR THERAPISTS about this. Encourage them to register. If you can make it, bring your child--please coordinate through the director of our local therapy center, Molly (see registration form for information). We have 6 spots available.
Just to let you know how valuable I think this is...I am considering a trip to Canada so Simona can see Elena privately.
**I am having difficulty with others viewing these links: these are text versions of the letter/form. Hope this works!**
Today Jason brought the girls to catch the end of my soccer game. After the game was over, E wanted to go "score a goal" on the field. She did her BEST walking on grass I have seen to date. I'd kick the ball forward about 4-5 feet, help her get steady, and then she would walk to it and give the ball a kick (or, more accurately, run into the ball with her legs). She doesn't fall right away while kicking, but she always eventually goes down. I'm trying to get her to walk, stop, kick, stop, walk. That's not working too well, though.
Here is E walking on grass. I wasn't filming anything at the beginning, so this is at the end of her grass time.
After that, we all went to the playground next to the field. It's not for toddlers (steps too large, slides very tall, etc.) but we did it anyway. She did some good climbing, and at the top was a twin slide. I showed her what I didn't want her to do, and then how I wanted her to do it.
Now, I'm not sure what I did differently--but obviously something was different about today. SHE GOT IT!! A first--E stays sitting up while descending a slide!
Next up: School recaps. Holiday prep, maybe. Recaps on some events.
Overall things are going well here.
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Mission Statement
No one plans, or expects, to have a child with a disability. When this happened to us, we started a desperate search to find information relating to milestones or expectations for our daughter after her diagnosis. Most of this was fruitless. My hope is for this site to help any person or parent in a situation similar to ours.
I'm a work-hard, play-hard multitasking wife and mother of two. I'm lucky to have a supportive family and friends, and live in a great town for children with (and without) disabililties. Elena is my firstborn, born at 33w with moderate spastic diplegia. Vivian is my secondborn--almost at 28w, but with a lot of help, made it to 38 1/2w and developing normally; she was diagnosed with focal epilepsy at age 9.
