Here is my superstar sitting barely supported, arms out dancing to a wiggles song. I am so proud of my warrior princess! Here Ellie is sitting cross-legged and dancing. Thanks to Kristin for this pic.
In other news the Little Miss walked into the bathroom all by herself in her Pony gait trainer and was very proud of the fact. (Why the bathroom? No idea except that it is a little room off the kitchen that is Fascinating - don't ya know?!)
We have decided to go with a PERC lengthening surgery on both feet as well as to release the side tendon that is making her foot toe in. When we look at her in her Pony and how much she loves it and how little time she gets in it because her feet are too twisted to stand her AFO's it seems the obvious thing to do.
A note on PERC lengthening - we found out that the guy who does them in New Jersey is not the only one and there are lots of docs out there who do. I was shocked when in discussing what to do Ellie's doc started to describe the PERC lengthening and I said, "Oh you do PERC lengthening?!"
Ellie's surgery is going to be on the 30th of October. I will describe it more later. But keep her in your most positive thoughts on that day.
16 comments:
Great picture! Great to see Ellie making positive strides with her physical therapy. I am working on a placemat/wall hanging for Ellie for her birthday. Anything special that you think she would like? It already has a cake with 5 candles, a party hat and some different textures with trim and such. Let me know what kind of bugs she likes i.e. ladybugs, butterflies etc. so I can add them either in an applique or button(s).
Maureen
Ellie you look so grown up sitting there on your own. I love your pink cheeks. We wish you all the best in your upcoming surgery. Kathryn look out after her surgery she is going to be running through the house in her pony.
How exciting! Sitting so big, and walking into the bathroom! Very impressive:)
I hope Ellie gets all the best benefits from the surgeries, with as little pain as possible. We will definitely be thinking of you all!
Can't wait to see her getting around even better in her Pony.
She looks amazing. I do think that sometimes our children will guide us in the decision-making process when it comes to procedures.
Can't wait to hear all about the procedure--you do such a good job explaining all these things.
Wow Ellie!! You. Look. Fantastic!!!!
Ellie is getting great at the sitting! She looks so stable.
When is Ellie having the surgery? Is there much of a wait? Does she have to go into casts afterwards? Looking forward to your description (no pressure)
L,
Jacqui
Hey, my boy just had a bunch of tendons cut/lengthened, for the same reasons--too twisty for his AFOs, no longer able to stand on flat feet. I posted a picture of him in big post-surgical casts in late August.
Because he's a lot older than Ellie, he also had to have some bone cut. The twistiness had made bones grow crooked enough to possibly foreclose standing at all, and he's old enough that the bones don't reshape easily by other means (he's had many rounds of serial casting, some botox, a couple other ortho surgeries, etc.).
So, if it has to be done, earlier is better. Hope it does all good things for Ellie, after the initial pain and discomfort.
Sorry Kathryn, Did read your post about surgery being on 30 October (boy is that close) but didn't register properly in my barely working brain. Blaming the lack of sleep (yet again).
L,
Jacqui
Maureen! You are such a sweetie! Ellie loves butterflies and caterpillars and frogs and pandas. Summer has not left us yet - so not pics of her in her new sweater. I am forever, it seems, waiting on winter. I guess I should just count my blessings! Miss you!
Penny- It's true. If the kid wants to walk and Ellie does, it's not fair to no let her when there is a way. Bone getting cut sounds horrible just the same! I hope to stay ahead of this.
Thanks to all for your supportive comments. Ellie and I go for our post operative appointment on the 25th. I still have some questions to ask to get perfectly clear on EXACTLY what they will be doing. After that meeting I will write about it here for parents who might be facing this same issue in the future. I still feel really bad thinking about subjecting Ellie to another surgery - especially one that is not because of something life threatening. But is it right to not help her walk? Especially when she seems to love to?
Actually, Jake's surgery wasn't to help him walk--that's probably not going to happen with him, though we'll keep that door open, of course. But even non-walkers have to be careful about tendons so tight that they pull bones out of shape--that's painful and it puts his knees and hips at risk for arthritis and dislocation. If he can't do even supported weight-bearing on his feet, his bone density is also at risk. So, in his case it was mostly done to prevent far worse issues down the road.
She looks like such a big girl. Great sitting and I am so glad to hear that she is getting around in the pony walker.
Great Job Ellie!
Melanie
mom to Daniel, 26 months w/ IS, BPP, and Spastic Quad CP
Awesome!! She looks so good! Prayers for the surgery.
Jacolyn
She looks SO grown up!!! She could be thirteen and rocking out to the Backstreet Boys or something.
Go Ellie! Somehow I can't decide if she looks peaceful or like she's rocking out on an air guitar. :-D
Hope Ellie's surgeries and post-op recovery goes well.
Janet
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