I thought that this anniversary called for a look back at some of the surgery results we’ve witnessed. Of course, it’s always hard to discern if the feat came as a result of the surgery, the therapy afterward, Ellie’s growth, or a mix of all three. I think that the reduction in spasticity (a direct and immediate result of the SDR) was a catalyst for most of Ellie’s physical progress this year.
What Little Miss Sunshine has accomplished in the past 12 months:
*Ellie can now sit crossed-legged for 20 + minutes at a time. She still needs some assistance to get her legs into this position, but once in place, she can sit beautifully. Before the SDR, her thigh muscles were so tight that it was impossible (and painful) to sit crossed-legged. Of course, it's such a blessing that Ellie’s now able to do this, because kindergarteners spend a lot of time on the floor, listening to stories, in this position!
*Ellie doesn’t need to use her AFOs to walk flat-footed anymore. Ellie’s ankles have always (surprisingly) had a decent range of motion, but we noticed an even further improvement after the SDR. All of her doctors and therapists say that she only needs to wear her AFOs when she sleeps. Ellie plants her feet flat while walking (unless she’s really tired), which is wonderful!
*Ellie hardly ever crosses (scissors) her legs while walking anymore! This was a huge hindrance to further progress before the SDR. The spasticity in her hips and legs would pull her legs across one another and she would constantly scissor as she walked. But, we noticed a MARKED improvement in this as soon as she started walking again after the surgery. While some of her spasticity has returned (Dr. Steinbok predicted this would happen), she rarely scissors anymore (we only notice it when she’s tired or when she’s really excited and tries to “run”).
*Ellie can sit independently on her potty seat. Believe it or not, this is a HUGE milestone! Everyone would rather “do their business” in private, and now, after helping her onto her seat, we can leave Ellie alone in the bathroom. We were unable to do this before SDR, because the spasticity in her legs would cause her to extend, and she would fall off the seat if not holding onto our hands.
*Ellie is a master in her walker! This is a skill that was aided by the SDR, but honed through therapy and rehab. She amazes me almost daily, with how she’s able to navigate around tight spots or turns. Her stamina has also grown tremendously this year (again, probably as a result of both the surgery AND intensive therapy). She gets mad at us when we keep asking her if she’s “tired and wants to ride in her stroller”!
*Ellie has started walking independently with her canes. This is a VERY slow process, but the fact that she’s taking ANY independent steps with her canes is a testament to her hard work and determination! My hope is that by 2nd grade, she will be using her canes at school. Wouldn’t that be fantastic?!
*Ellie’s balance has really improved and she’s now able to reach for things with only one hand on her walker. This is a major milestone, too, as it gives her another level of independence. She can shake people’s hands now, while standing in her walker! A little politician in the making (a girl after my own heart!).
Of course, Ellie has progressed in so many other areas of her life (speech, hand dexterity, emotional maturity, etc), but these are the ones that I think are most related to the SDR surgery.
Several people have asked me if we’re happy with the results and if the surgery was worth it.
“Yes!”
Admittedly, in my heart I was hoping that Ellie would be walking everywhere with canes by now, but she’s accomplished SO MUCH in the past year, that I don’t want anyone to think that I’m one bit disappointed in my Superstar. She is AMAZING!
And, this is only year ONE! Here’s to another amazing Year TWO!
