Monday, September 27, 2010

0.8 Miles

THAT'S RIGHT. E's on a (paved) trail! It has some (slight) hills, but overall it's a pretty flat. This portion of the Rivanna Trail has a 0.8 mile loop, with a playground near the "end" of said loop. She made it THE WHOLE WAY!!! It was a gorgeous day!

Vivian at the start

E got stuck going uphill

Mom and E

Oh Great...Viv is done walking

More than Halfway, and still going strong

Taking a break to look at fish in the river

Vivian plays with E's trike (the flag, mostly) while E and I are hunting for pretty leaves

The Big Finish

We are definitely coming back here to do this again! Great trail, GREAT BIKE, Great company! HUGE thanks to Grandma and Grandpa for coming down for our trail ride, and to Grandpa for taking these pictures and video!

Monday, September 20, 2010

Does your kid fall all the time?

Mine sure does. Don't get me wrong-Elena falls much better these days than she used to. Before, it was the "falling like a tree" phenomenon, where at any moment, she'd stiffen up and fall (or fall and stiffen up, take your pick) and hit her {insert body part here} followed by her head. Well, 5 years and tons of bruises later (but no major injuries, *whew*), Elena normally falls forward "knees-hands", sideways "rump/hip-hands" and backwards "rear-hands-maybe head". For any readers new to the CP experience, this is a big improvement.

A while ago I mentioned I was looking into knee protection--E has been falling HARD on her knees as she goes down...part of that may be b/c she's been practicing "jumping" on the couch or on carpet (landing on her knees), and has unwittingly incorporated part of her "jump" into her fall. I figured I needed to find something to soften the blow for my poor girl.

I made some knee pads out of soccer socks and old nursing pads...but they didn't stay on her knees. Some of you suggested using wrist "sweat" bands--good idea, but they didn't stay on either. My next idea was to sew padding into each of her pants, but that didn't help in the summertime...and then I found Baby Kneez.

Man do I love these. And no, I didn't get any for free, and they didn't ask for an endorsement. These knee pads STAY ON, and don't cut off E's circulation. Elena is 5 years old, about 29 (?) pounds and approximately 38" tall. I wrote an email to customer service, asking them honestly if they thought their product would help my child. Of course they said yes; but they said they'd take them back if I wasn't satisfied, and even offered a larger size that they haven't put in the store yet. I bought both the small and large, and tested them out for two weeks (the small size works better for E). I had a few questions along the way, and customer service was very prompt and helpful.

The confidence these little knee pads have given E has been fantastic--especially on hard surfaces, including outdoors. She wears them almost every day. Her little knees look better, not as bruised or scraped, which gives me piece of mind. E's gym teacher LOVES them, as he's seen E's attitude change. It helps that Baby Kneez come in lots of colors (we bought every one, as Elena is very fashion conscious). E can wear them over or under clothes, and we put them in the washer to clean--we just don't dry them, and to stretch them out after washing, I wear them on my knees for a few hours--and they don't cut off my circulation, either.

Sunday, September 19, 2010

Trike Slalom

There she goes again!

I LOVE this trike. We're going to take it out on a paved trail next weekend--it has some hills, so we'll see how that goes.

Yay E, great riding!

PT Recap: Balance and Ramps

Last week E was at PT, doing her thing. There is a PT intern working with Theresa. E loves Becky.

Trying to work the ramp with her AFOs and shoes on:

Trying the ramp with her sneakers sans AFOs:

Even though there might not seem to be a different going on in these ramp videos, what's different here is that E is initiating her movements well. This is paying off in real life, as E can now put her feet up a step with more confidence (without a handhold or crutches) but does not do the weight transfer yet. One piece at a time, I guess.

Working on balance, with a balloon--note her hand position when trying to bat at the balloon. This is common with kids like Elena--the act of flexing your palm "up" is akin to the same movement in her feet--a movement that doesn't come natural to her. With better balance, I think she could use the palms of her hands easier.

Wednesday, September 15, 2010

2nd Annual Holiday Card Exchange, Take 1

Calling all Doodle Readers!

Last year I asked if anyone wanted to do a card exchange for the holidays. Elena LOVED it, getting mail was such a great part of her day. We loved the pictures everyone sent, of their kids, or their pets, or a drawing of things they like to do.

We send cards (a few were late...and one never made it. I'm sorry about that, we had a giant family emergency right after Christmas) with a picture of E and a drawing for the intended recipient. Elena tried to write at least some of each letter.

If you sent a picture, we have it on E's Buddy Board at home, and we still talk about you. It has been a great way to remind Elena that there are other kids out there like her--kids who wear braces, or wear glasses, who have siblings, friends, go to school, etc. etc. The best part about it was I didn't say anything when she first saw your picture. But I could just SEE Elena's face recognize she was not alone in her struggle with CP. That is invaluable.

So, I'm starting a little earlier this year. The main reason is--if some of you out there want to share addresses as a group, I will organize that. Keep in mind, we tried to write ~20 cards last year, and it was a real struggle to get E to draw that many pictures or write that many words, and we started pretty early.

If you are interested, please email me ( with the following information:

Your name (and/or child's name), child's age, diagnosis, favorite thing(s)
You address (in full, including country)
How long mail will take to arrive from Virginia, United States (if you know) (particularly important for overseas mail)
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 (by the end of October), and we'll go from there.

Sunday, September 12, 2010

Taming Tantrums: Professional #2 says...

After E's last nighttime meltdown, I went crazy looking for help. One of the resources I found was at the University's School of Education, where they have child (?) psychologists. We started seeing someone as a family, primarily for E's sleep issues, and secondary for how to cope with Elena's self-realizations regarding her disability.

The family counseling is going okay. I guess I say okay, b/c things at home are going pretty smoothly. I told the therapist that my end goal was to put E to bed, no problems. Meaning, I tuck E in, smooch, goodnight, leave. Everyone rests until we wake up the next day. If E has to get up for some reason (bathroom, etc.) she takes care of it herself and then goes back to bed herself.

RIGHT NOW, we are in such a good place...E goes to bed by one parent (usually me) tucking her in, smooch, then reading books. She falls asleep during the books (she isn't looking at them while we read, she's "resting her eyes and her voice"). Since school has started, normally it's a 5-10 minute reading session and that's it. Rarely, it's a 40-minute reading session. Some nights she needs help in the bathroom, but she gets there herself, and then we help finish up and then put her back in bed and read another book to her while she falls back asleep (but this hasn't happened in a while).

Comparatively speaking, this nighttime routine is NIRVANA. It's a world away from hours of screaming every night.

Well our therapist wants us to go for the end game. Tuck in, smooch, leave. I am extremely apprehensive...we've come SO FAR. Things ARE GOOD. The therapist says we need to Ferberize her for her own good (and ours). Deep down, sure, I think it would be better for her (and us) if we could get it to work. But why rock the boat when things are SO CALM?

I don't want to be negative...but you all get me.

E's IEP is in place

Whew. I know a lot of parents out there struggle with IEPs and school regarding their child's inclusion and education. I feel like I don't have much to complain about. Seriously.

I'm not going to go into details of E's IEP--mainly b/c since this blog is public, I am worried that some other local will read it and get angry about it. Or God forbid some school official reads it and decides it isn't appropriate. If you want to know, I'll tell you privately.

What I will tell you is that even though I have a great team, this whole process made me sick. LITERALLY. We've had 3 IEP meetings for E's Kindergarten (regular classroom) year. The stress involved, the worry about "what if I have to fight for this", "what if they deny that", "how will this work otherwise", kept me up for three days straight (before the last meeting, last week) and I was literally nauseous from stress. I cannot imagine what it is like for parents out there that have little support from their IEP team.

E's kindergarten class literally travels all over the school, 4 times a day. That's enough to tire out most of the class, the ones who walk about normally. For E it's extremely taxing. But I want her in there--included, doing as much as she can on her own. Making her own friends, writing her own journal, doing PE her own way, playing on the playground, carrying her own lunch, making her own mistakes, etc. Her educators do too. More than anything, E's teacher is amazing...not only b/c she's a good teacher, but b/c she knows the stress I feel and my worries (will E fall? will the kids tease her? will she get hurt? will she be able to do XYZ independently? how can she do X and be successful, like her peers?). She knows what it's like to be a special needs parent--because, literally, she's been there.