Progress

Our girl, she's doing big things and we're seeing big results.  But it takes time and patience and hard, hard work.  She is downright whopped at the end of the day but still her spirits are up (most of the time) and she literally sings her way thru therapy to the delight of all of her therapists.  Yesterday she sang out, "OK, this is really hard noooooowwww, please it's really hard noooowwww...." She's a trip, Miss H.


We got here 3 weeks ago today.  Initially a lot of time was spent on core strength, using therapy balls, prone activities, sitting and reaching with her arms.  When we first got here, Hannah could stand with support for less than a minute before her legs buckled under her.  Little by little, she has progressed to working on side-stepping, lots of sit-to-stand activities to build up her quads, and some walking in the parallel bars.  In OT she continues to do upper body work, trunk control on therapy balls and on the mats, motor skills using a slant board and we're even incorporating some school-based stuff which I'm thrilled about.  I told her OT how Hannah's verbal and comprehension skills are top-notch but she struggles a bit with recreating on paper an image she sees (interlocking circles for example) so the OT is doing "schoolwork" with Hannah while also working on sitting posture, etc.

We've done a little bit of walking in the parallel bars and even tried a "lite-gait walker" which used suspension straps to bear some of the weight for Hannah so she could just practice taking steps.  She had some adjustments made to her orthotics to provide more support since her quads are pretty weak and this has helped with her standing.  Now 3 weeks in, she can stand to wash her hands and brush her teeth, side-step during therapy, and is now today she got in her walker again for the first real attempt since before surgery.

That was tough; she was pretty hesitant about it, nervous I think, frustrated that this thing she did so effortlessly before is now very different because her body is so different, and it's harder.  She did not want to walk and she complained that it tired her out.  I made a deal with her that if we do lots of good walking she can pick out an art kit at her new favorite store, Target.  On her second attempt later that session, this time with her OT and not her PT, she was a little more compliant/interested in trying. That's the clip you see below.  She expressed interest in walking which is great.  But then in the afternoon PT session, she was resistant again.  I guess that's how it will be for awhile, and it's clear it's going to take a lot of work to get her back to pre-surgery ambulation.  But I know once she feels more comfortable, she will be so happy to be getting around that way, so much faster and more independent than in the wheelchair.  So in this clip, you can see the therapist helping to advance Hannah's legs with each step, as it's all about teaching her better/more effective gait patterns than she had before the surgery.  This is also why they don't want to rush into getting her ambulating too soon, before they build up her strength, so that she doesn't fall back into those old patterns.

 

Another clip I have shows Hannah in the pool, with a lifevest on.  I had brought it from home and wanted to try it out, because trying to figure out what Hannah can wear in the pool to be an independent swimmer has always been a challenge, since she has a hard time keeping her head above the water and her feet under her.  In this clip, she has wrist weights on her ankles and her lifevest on and she is able to swim on her own! It's so amazing to see, and what's even more amazing is when you look at how well and how much she is moving her legs in the water.  Reciprocal movements, with wide open legs-just beautiful and something she could definitely not do before the surgery.  In the water, the results of the rhizotomy are somewhat easier to see than when she is on land, but it's my hope that as she gets stronger and stronger, she will be able to move just as easily when she's out of the pool in this new and more loose body of hers.

Another clip I have is of Hannah tall-kneeling yesterday.  You can see she's having a blast playing with the PT and her buddy Ayana who is a child-life specialist that Hannah's taken a shine to.  Actually I think H has taken a shine to most everyone here! But anyway, the length of time that she can be in tall-kneel is so impressive here, and a big improvement from before.  More progress, horray!

OK, it's getting late so those are my updates for now.  Big day tomorrow, Hannah's PT from home and one of her students are coming to visit-we're so excited to show her all the good work H is doing and how amazing her body feels without all of that tone.  Plus we love these good buddies of ours and special visitors always make our day!  TGIF:)