Just a quick note--I took the girls out on a "bike ride" this weekend.
We've done this before, but this is the first time I've taken both kids out 1) where both kids were interested in pedaling a bike and 2) Elena's feet were NOT strapped to the pedals. At PT, she's been working a bit (using the bike in this video) trying to put her feet down and back onto the pedals. Theresa has also tipped the bike to try to encourage Elena to put her foot down to stop a fall. E does it, but slowly--still this is all very good progress.
Today was the first time ever E's been on a bike outdoors without her feet strapped in, and the first time doing any kind of incline. This one is very slight, but for Elena, it's definitely a challenge and I'm so very proud of her!
I also notice how Elena encourages Vivian--what a great big sis! Up until this video, I couldn't get Vivian interested in actually pedaling a bike!
It's obvious to me that Elena needs a bigger bike frame. Our PT says that kids with CP like Elena feel more comfortable on a bike where their legs stay more bent--but I think E's grown so much that this size bike is just too tiny. She has been on larger bikes (just sitting on them, stationary) and I have to admit the fall from one of those bikes seems a bit daunting. Elena has already fallen while riding a bike (twice, I believe), with her feet strapped in--and got right back up each time (with assistance). It's our hope that with enough practice, E will learn when to keep her feet on the pedals and when to take them off to prevent a fall. So far we are off to a slow--but very promising start!
Last weekend we went to visit our friends, the Andersons. They invited us to go kayaking!
Avery and Elena
I'll admit, I was very nervous. Josephine wasn't worried; she said Avery took right to it, and she thought E would too. While there are lots of similarities between Avery and Elena, sitting up straight with straight legs out in front--"long sit"--isn't something Elena does well. I was concerned about 1) tipping out of the kayak--E can right herself in the water with a swim vest, but it might not be as automatic in cold lake water, 2) E's posture resulting in an unsuccessful kayak experience. I still "engineer success" when I can for Elena, as I strongly believe it is one of the reasons she is excited to try new things.
The car ride wasn't that bad; the girls read lots of books, and were ready to play with the Andersons when we got there. All the kids played well together, ate some lunch, and then we went to a park--to "test out" the kayak.
The body of water was a small riverbed (creekbed?), and on that day, the water was maybe 1.5 feet deep. Avery went first, while Elena and Vivian studied what she did.
The kayak had a "seat back" for back support. Here is Elena, trying the kayak with a swim vest, her shoes/braces on, and the seat back.
Paddling isn't easy
With this combination, Elena was frustrated. The seat back was in the way of her elbows when she tried to paddle, as was her swim vest. Ditching the swim vest really wasn't an option, but we decided to try it in the creek b/c the danger was minimal, and we wanted to see what would happen with her paddling ability.
No vest, with seat back and shoes/braces
When we removed her vest, she still had issues with the seat back. In this configuration, she couldn't manage to sit up and try paddling without resting against the back support. So, we removed it--and her shoes/braces.
There she goes!
It's still a challenge for her to sit comfortably in the kayak while paddling--the tone in her legs makes it hard for them to be at rest--but this combination (no shoes/braces, no seat back) seemed to give her the best results.
Bonus Vivian!
Viv's a natural!
Then we were off to the Lake!
Viv and Brogan, buddies on the dock
The Kayak Team (one adult, one child) and the Paddleboat Team (one adult, up to 4 kids) ventured out onto the gorgeous lake. Avery and Josephine went kayaking first, and I took the kids on the paddleboat while little Oliver stayed with Gabe on the dock. E even helped propel the paddleboat!
One BIG feature of the Kayak Team was the tow line; the child kayak was tethered to the adult kayak by a thin cord. This played a HUGE part in our success--the kids got to do the paddling, but ended up staying close to the parents and got the feel of moving around the lake.
Avery and Viv ready for paddleboating
E's ready to try it!
Gabe and Elena
What a view
Mom and Viv
Mom and Viv
Paddlin'
E and G circle the Paddleboat Crew--Ahoy!
Spectacular
It was a PERFECT day to be outside--and I'd have never have tried this on my own. It was a fantastic experience for all of us--patient instruction, quiet water, beautiful weather, lovely scenery--an amazingly successful adventure! After we finished up at the lake, we all stopped for dinner at a great local restaurant. The kids get along so beautifully...I wish we lived closer (it's a bit of a drive for a day trip). Thank you so much Andersons, we had such a great time!
A few weeks back we made a whirlwind trip to DC to visit some friends. Krista wrote me a message telling me she was closer to our area, and if I'd be interested in meeting her family--especially Hannah, one of her twin daughters who just happens to have CP. We decided to meet at the Natural History Museum.
I decided to bring nothing but crutches for Elena. Last time we were in DC we opted for E's wheelchair. This time, we decided to drive into the city (not taking the Metro) and see how long the girls lasted. Vivian was going without a nap, so we figured both kids would get tired before too long, and they would get back in the car and head home.
Another reason I wanted E to just try her crutches was to give some inspiration for Hannah; Krista said Hannah wasn't taking to hers too much, and maybe having Elena as an example might help.
It was really fun to meet up in the museum; here we were, some adults and a pile of kids (and E and Hannah take a lot of space). It was just wonderful to be around other adults that "get it", in terms of mobility challenges and stuff like that. Hannah, Isabelle, and Sammy are such wonderful company! The kids took to each other right away--it was just adorable!
The kids' favorite place was the Discovery Room!
Skulls
Budding scientist?
Isabelle and my girls
Birdwatchers
Hannah and E
We ended up breaking for lunch in the lower level cafe. That was really interesting--mainly b/c E and Hannah have some of the same table postures. Sometimes I get annoyed at how Elena's hands seem to be in her food, or she's not paying attention to where her hands are, or she's slumping over the table. I understand that Elena has a low-tone trunk (part of the classic spastic diplegia package), but it was very eye-opening to see Hannah at the table. Both girls' forearms tend to be "heavy" and rest on the table in some way. It was actually great--it helped me better understand how low muscle tone affects the usage of upper limbs.
After that we headed to the butterfly room! All the kids *really* wanted a butterfly to land on them!
Fascinated kids!
They are both running out of steam...but still smiling
The butterflies loved Hannah!
Tired kids (Viv tried to nap on the floor right after this)
HUGE thanks to Krista and her family (including her mom) and to Jason (and the kids) for making this a huge success!
More posts are upcoming (things have been busy before and after the start of school) and to be honest, I'm not even sure why I'm doing this...
I entered Elena in a model search. We buy a lot of her clothes from this company, and I thought, "Hey! Wouldn't it be nice to see E in that catalog/online ad?"--so I did it.
If you want to cast a vote for her (you can vote 1x/day), here is the link:
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.
