Today marks eight weeks since Nina had her rhizotomy. It seems like it just happened yesterday and at the same time with so many changes in our lives it feels like it happened a long time ago.
Today I want to revisit the 4 main goals we had for Nina before the rhizotomy once we hit the 8 week mark.
1. Nina will stand for 15 seconds independently without upper extremity support.
We are not there yet. We are working on balance, but the longest we have gotten her to stand is 11 seconds. Now, that might sound pretty close to you, but the goal is for her to do this consistently. We can get her to do it for 3 seconds consistently, so we are not close to reaching this goal. Fear is getting on her way. She is terrified of falling and she does not know hot to fall. A fall for her can be very serious, so we actually started working on learning how to fall.
2.Nina will ambulate with reverse walker, demonstrating initial contact with her heel and knee extension throughout stance phase with minimal assistance at her pelvis.
I love the walker and yet I hate the walker. She can take really good steps with her walker...if we remind her to do it. For all other purposes the walker prevents her from walking "normally." For those of you that have kids with Cerebral Palsy, you know exactly what I mean. A walker can be a crutch and kids can use their upper body a lot more than their legs. Another thing to note is that Nina's hamstrings did not grow and they are too short, therefore initial heel contact right now is not an option, but she does some good flat foot contact, which we want to see rather than the toes.
3.Nina will sit in tailor sitting position for 10-15 seconds independently.
What about 30 minutes? yeah, she is doing so so so good with this one! And she begins to redirect herself when she is playing on the floor.
4.Nina will have 10-15 degree increase in her lower extremity range of motion."
She does! And it is incredible!
So as you can see, some goals she has done very well with, others we are still working on.
Nina is actually able to walk on her knees, which she could not do before her surgery. This is so good for her. She is beginning to stand using only one hand from a half kneel and she is also doing okay walking holding on to us with just one hand!
Today I asked the Physical Therapist if she though Nina could benefit from using arm crutches. She responded that of she is not walking independently in 2 weeks we will look into that. Her surprise really surprised me, Nina walking independently in 2 weeks? The PT really feels Nina is not walking because of fear, which is what I have always felt. She says Nina is very strong and she can physically do it, we just need to get her to actually do it.
Nina is so close! So very close! She just needs to want to do it, she needs to brave it out and say, "You know, I am just going to give it a try!"
I will update again in 2 weeks, let's see where Nina is at 10 weeks post-rhizotmy!
http://www.dailymail.co.uk/health/article-2000891/Six-year-old-girl-told-walk-fulfils-dance-dream-pioneering-surgery.html
ReplyDeleteAwesome!!!! Love this post Ellen. Nina is doing amazing and i love hearing about her progress...I actually get goosebumps and tear up reading about it.
ReplyDeleteI know how you feel about the walker...that's why we now try to encourage BEn to use his quad canes. The walker seems amazing to everyone out there who doesn't have a kid with CP...and it is amazing, but you're right...it encourages upper body strength and the use of momentum and spasticity to move...not actual proper walking and strength.
And so great that you are working on falling...Ben has come so far since we started doing this last summer at Conductive Education...made a huge difference in the fear factor for him.
Hugs to you!