Mobility

There is quite a lot happening in Leah’s world these days from a physical/mobility standpoint.  She is back in Physical Therapy for weekly appointments after taking a break since August.  We decided to switch clinics this time, and I’m really happy that we made the move.  We are now going to Gillette for PT, and I had heard really great things about them from other SB families.  It seems like they are much more familiar with SB than we experienced with Children’s, at least with the therapist we had.  They also have a great facility and in the 2 visits we’ve had, I am very impressed. 

2 weeks ago we had an evaluation with a therapist, who measured Leah’s feet to see how flexible they are.  Her left foot is very loose but her right is tighter and can just barely made a 90-degree angle.  We need to get her feet into AFO’s for longer periods of time now to give her feet and ankles a nice stretch.  We talked about the goals I have for her, which are to be able to sit independently and also to get her to walk, and how we are going to use the PT to achieve those goals.  Her therapist was really knowledgeable about SB (and actually sees a little boy with SB!), and that makes me feel confident that she’s going to help Leah.  We agreed on weekly appointments for the next 10 weeks, and I’m really excited to see how things progress.

Let’s talk about our goals… On the sitting, she cannot sit up by herself.  This is something that has been a bit disappointing for me.  I thought it would come easier for her and that she’d be able to do it better than she can today.  She does sit nicely but she needs her hands on her legs or to be sitting up against something for support.  It makes it challenging for her at school or at home when she’s trying to play on the floor.  At school her primary transportation is her big wheelchair, and it’s not easy for her to get toys off the floor or sit with the other kids at group time.  She has a corner chair that she can sit in, which is flat on the floor and 2 little walls behind her.  It gives her the support she needs to be on the ground, but it buckles her in so she’s confined to it.  There aren’t always enough teachers for her to sit on someone’s lap, so it is really important that she can sit up on her own, if at least for just a couple minutes at a time.  Our other goal is to get her walking.  Now I recognize that this is something that will take lots of time, practice, energy, and most of all, willingness from Leah to be able to do this.  It’s going to be hard!  She will need a lot of support from her braces and great upper body strength to do it.  I think she can!  I think she wants to.  I want to give her the opportunity to try it, and if she chooses that it’s not for her, then at least we gave her that chance.  At least it will be her that decides that.  There will probably be a time when she chooses her wheels over her legs, and that’s ok.  There are times, though, when wheels are going to be difficult, so I want her to be able to do things like getting on and off an airplane, transferring to the couch, or not being confined to a chair when she’s visiting someone who’s house isn’t accessible. 

At our first “real” appointment this week, we worked on both sitting and walking.  For sitting, we had Leah reach for puzzle pieces and throw frogs into a bucket.  She had fun and got her to reach with both hands.  Some of it for her is having the confidence that she can do it, and then gradually building up the strength.  Again, I think a couple minutes is realistic at this point.  Then she walked.  Now, this was a pretty big production!  But she did it.  She got into her HKAFO’s, then strapped into a harness, then we buckled her into an overhead contraption so she was standing up all by herself.  We put her on a treadmill and the therapist turned it on really slowly, and she took Leah’s legs and walked them on the treadmill.  She seemed to really enjoy it, but mostly because I was blowing bubbles at her.  I can’t figure out if she really knew what was going on, but afterwards she said “Leah walked.  Mama watched.” Next week we’re going to try doing the same thing just without her HKAFO’s on to see if she’ll do any of the movements on her own.  She’s still doing swimming lessons, and I asked her instructor to get her to start kicking her legs in the water.  It’s all about building muscle strength and control in her legs. 

Then, finally, we saw her cranial-sacral therapist.  This was the first time we’d gone 3 months in between visits, but we’re going to go back to every 8 weeks because that was just a little bit too long.  When we were in the car on the way there, Leah kept saying “owwie back” so I told her that her therapist might help make it feel better.  She started out on Leah's back and could tell why she was in pain… her right and left sides were totally out of alignment.  Her lower back and pelvic muscles are very weak, and she’s gone through a pretty big growth spurt over the last couple weeks, and her body hasn’t been able to keep up with it.  She gave us a few suggestions of different exercises to do with Leah to strengthen that part of her body.  First, we need to get her up into a crawling position on her hands and knees.  For “typical” kids, getting up on all 4’s gives the spine a nice curve.  Leah’s spine is really curved through her lumbar but then starts straightens out towards her neck.  When we got her up in that position, she was really unstable and I could see how weak her lower back actually is.  She overcompensates by having incredible strength in her upper body and arms.  Now we need to balance that out.  Since she never learned to crawl, she also missed out on the cross-brain activity that comes with crawling.  The motion of left arm/right leg engages both sides of the brain, which we now need to simulate for her.  By moving her body for her, she will still get that benefit, and then maybe she’ll be able learn to do some of that on her own.  Wow, I never knew any of that.  It’s just one of the many reasons I love her therapist and feel beyond blessed that we have her. 

We still have a lot of work to do with her.  We want to be able to give her every opportunity to help her figure out how to use her body and simulate some of those things for her.  Eventually maybe she’ll be able to make those connections for herself.  We hope!