HelpEmmaWalk – Emma's SDR Journey

Hi Everyone! I am so very excited to learn that SDR is coming to the North of England!! We are SO VERY GRATEFUL for all the fundraising you did for us almost two years ago. But now families in England finally (soon) will have the option of going to Bristol and up North, and hopefully one day on the NHS. http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.bbc.co.uk%2Fiplayer%2Fepisode%2Fb01cmglp%2FLook_North_%28North_East_and_Cumbria%29_28_02_2012%2F&h=DAQEB0rALAQGiGgIpJMpIHJk4Ka7DC9Y495rBU37bSDvHoQ

Hi Help Emma Walk Fans, just a quick update to let you know that Emma is still hard at work. We’re doing ‘intense dance physio’ with the Just Dance programs on Nintendo Wii. Within two weeks she achieved standing up, completely unaided and dancing while holding the remote in one hand. She does all the hand/arm movements, and tonight she started to ‘dance/march’ in place. Fantastic!!! Go Emma go!!!

I wanted to show, for those of you who don’t know, or who simply don’t remember, how far Emma has come.  The picture of her with her walker is from September 2008, the first day of school in Reception class (Kindergarten) almost age 5.  The picture of her using her yellow crutches is from October 2011, almost age 8.  Here she was walking in the forest with her classmates on a ‘walk to school’ day, having absolutely no problem getting around on the rough terrain.  It is absolutely amazing, the difference in her.

It has been exactly one year since we landed in St. Louis, Missouri, USA for Emma’s SDR (selective dorsal rhizotomy) surgery.  It was the hardest decision we’ve ever made, but the best decision we’ve ever made for Emma.  There is no cure for cerebral palsy, but SDR has provided Emma freedom we never dreamed she’d enjoy.  It has, quite literally, changed her life, and changed all of our lives, for the best.  Emma is independent in so many ways now:  She can get to the toilet independently, take care of her business independently, and get back to whatever room she wants to within the house, all on her sticks/crutches.  She can leave the house through the front door and walk to the car independently, and get in the car on her own (if the car door is open) and manoevre into her seat all by herself.  She can join her sisters in whatever activity they are doing in the house, no matter what room they are in.  She can walk up/down the stairs on her own holding onto both railings either side (although we still are with her for safety reasons).  She can sit in a chair and swing her legs.  Speaking of swinging, she taught herself how to swing on the outdoor swingset in April.  She can come to the dining table when called, and get into her chair all by herself.  She can sidestep from her bed to her desk in her own room, and when feeling really brave, sidestep over to the light switch, reach up and turn it on/off.  She can participate more fully in dance and performed in 3 shows since her surgery, and even though she still must use her walker for that, she can let go of it, balance, and do arm/hand movements that she couldn’t do before.  She can stand more easily at the sink basin and wash her hands and brush her own teeth.  She can kick a ball with her foot.  She can ride a bike more easily and without assistance, and likes to go fast, fulfilling her brave streak and need for speed.  I could go on and on and on……..she can do all these things and more — things that we ALL take for granted on a daily basis.  Emma was given a new lease on life, and even though things still might not be perfect, after all cerebral palsy is a lifelong disability, they are probably as good as they’re going to get.  And we are all thrilled for her!!!  And if she continues to improve, then all the better for her.  Her doctors think she will indeed improve, and only time will tell.  Emma walks on a treadmill almost daily, does exercises at home and at school, does ‘fun’ therapy like bike riding, swimming, and dance, and is looking forward to trying horse riding, sailing and anything else she can do.  She is practicing with single crutches now, and it is absolutely amazing to see her walk so fast and so well with those.  She is a determined little girl, with the most infectious big smile and positive attitude, and we think she is going to achieve great things in her life, no matter what she does.  THANK YOU all for your support, for following her story, for helping us with the fundraising and making this possible for her, and for helping to spread the word that children like Emma deserve a chance for a better future.

Hi Everyone!  Sorry the posts are far and few between, but it’s been a very busy year.  We are less than one month away from Emma’s one-year anniversary post-SDR surgery. Emma continues to make progress and we are happy to report that she is walking on single crutches now.  She walks on these very confidently, and today told me to “go away” and not hover over her like I do for fear she’ll take a fall.  In the video you can see she already has a bump on her forehead!!  She is very determined to practice on the single crutches so that she can use them at school.  Due to safety and stability, she is still using tripod (3 legs) or quadripod (4 legs) sticks/canes in our house or at school and out shopping.  She wants me to leave the single crutches for her to use at school — how do you explain to a 7-year old that she’s just not ready yet, without losing her determination!!??  So I let her use them to/from the car and classroom, which is a nice, long distance and all her friends and the mummies at the school playground can “ooh and ahh” at her doing so well.  She is such a ham, and performed in her first dance show with the Lynden School of Dance, onstage with 150 other dancers, performing 3 shows on a large stage to a combined audience of at least 400 people.  She and her twin sister Michelle were in their element and loved every second of it.  No butterflies in the tummy or anxiety for these two Hollywood A-listers!

It seems I can’t load the video to the blog, so go to the Facebook page Help Emma Walk to see the video.  Thanks!  http://www.facebook.com/pages/Help-Emma-Walk/355762732237?ref=ts#!/pages/Help-Emma-Walk/355762732237

Emma is still doing fabulously well, 8 months after her SDR surgery.  She can sit in a chair, dangling her legs, and swing them — just like any other kid.  Things like that, we all take for granted, but Emma is just discovering for the first time.  She can walk up and down stairs with adult assistance.  She can hold hands with someone and walk a long distance on any surface.  She is learning how to swing, and almost has it!  And she is using much less equipment — hardly ever in her wheelchair and walker now.  We went for a long walk in the Farmer’s Field on uneven ground, and had a picnic — something we could have never done before the SDR surgery.  Emma can stand in place holding her balance for 80 counts now, and her goal is to get to 100.  And she can still take approximately 30 steps completely unaided down the hallway of her house.  With strength, patience, determination, and time, she will inevitably be able to do more and more.  To listen to a recent radio interview go to:  http://www.newburysound.co.uk/help-emma-walk-update-i-8776.php

Happy 2011 to all of you!  Emma started the new year with a new discovery — she can ride a normal bicycle!  Before her SDR surgery, Emma didn’t have the balance or coordination to sit on a bike.  So we had to put her in those disabled tricycles with the straps to keep her torso and feet in place.  But she wanted to try her twin sister’s bike and when we put her on it she sat on it started pedalling like she’d been doing it forever.  She’s still working on getting her feet all the way around in a full pedalling circle, but currently she can propel herself forward by pushing the pedal with one foot.  It’s fantastic excersize (and therapy) for her, and we’ll keep practising until she gets the hang of proper pedalling.  The freedom it gives her is amazing, and she absolutely LOVES it.

For a further update on Emma, the local newspaper didi a 6-month post op follow up story: http://www.newburytoday.co.uk/News/Article.aspx?articleID=15603

Hi Everybody!!  Sorry it’s been awhile since the last post.  Been busy putting in the hard work.  I am happy to report that Emma achieved between 20 – 50 independent steps this week, and is increasing with every day. That’s without sticks, and no hand holding. Just her and her own legs!! It’s still a bit wobbly — she calls it ‘zombie walking’ because that’s sort of what it looks like. And I have to hover with my arms outstretched around her to protect her if she falls. But her balance and coordination have improved immensely. Everyone at school is so amazed and proud of her.  It is so fantastic!!

Emma is walking independently with her tripod sticks!  We went to the playground today and she walked with them at the playground — without anyone holding onto her or even being near her.  She did a ton of walking today, and she walked with them all the way from the house to the playground and all the way back.  It gives her so much freedom and independence, and it’s absolutely amazing that she’s achieved this progress mere weeks post-surgery.  If you are on Facebook check out the video at:  http://www.facebook.com/video/video.php?v=431197177522&saved#!/pages/Help-Emma-Walk/355762732237

The improvements in Emma can also be seen in other ways.  She is much more confident on the swings and the see-saws at the playground, and is able to play more comfortably and confidently.  She was a whole different little girl today than the last time we were at the playground 2 months ago.

Emma has achieved walking with her walking sticks independently in the house!!  Actually, she has been capable of this all week, but her confidence is still low so she has needed me to touch her shirt to let her know I’m there.  But last night she walked all the way through the entire house a couple of times without me touching her at all.  And then this morning on the walk from the car to the classroom I let go a couple of times to give her the experience of walking with the sticks without me.  She is doing absolutely fantastic and it’s amazing to see her walking so solidly with the sticks only 6 weeks post-op.  She’s even going quite fast with them!  Keep checking back weekly/monthly for updates as Emma continues to improve and do new things.