Saturday, November 26, 2011

More amazing feats

So we have been wondering when Hannah might move on to using crutches or canes.  We played around with them once since her surgery but without much success.  Before surgery, she could stand with the crutches but not take steps independently.

We saw Hannah's regular physiatrist last week and we showed him how Hannah has been wanting to, and doing a really good job with, walking holding one of my hands.  She liked to do this in the past (pre-SDR) but would lean way into me and need a lot of support and would not be able to walk straight this way for very long.

Now she does this one-handed walking really well and asks to do it a lot.  So the physiatrist saw her walking and said she is definitely ready to start working on the crutches again.  I shared this with her PT, who then made a plan to work on that with Hannah when she came to our house last Tuesday.

The PT's initial plan was to have Hannah practice standing in the crutches independently. She put some blue duct tape down on the floor as a focal point in case they also did some practice steps.  But as soon as Hannah got helped into the crutches, she just took off walking in them! On.her.own!!!

By the time I got there with the video camera, she'd done 3 rounds of walking along the blue line and was starting to get fatigued and distracted so the clip below isn't her best effort, but it is still so exciting!

We didn't do any crutch walking while we were away for Thanksgiving, but Hannah and her PT talked about practicing a lot so she could show her friends at school, and also show family over Christmas.  Tonight before bed, Hannah did a lot more walking around the house.  She has figured out how to right herself when she starts to lose her balance, get stabilized, and then take a few steps.  She could even make a slight turn when needed.  It's pretty amazing.  She still has a long way to go but I can't believe how it just clicked all of a sudden for her, and she is also very motivated and excited about it right now which helps a lot.

We will definitely plan to bring them with us on our travels over Christmas and in the meantime, hopefully I'll take some more video of her progress as it continues.

But for now, here is the clip from Tuesday:

So much to be thankful for...

Monday, November 21, 2011

One grumpy "supermama"


Some time ago, I copied this piece another mom wrote somewhere in the blogosphere, about this notion that other people look to her like she has some kind of super powers because she is raising a child with a disability.  I can't find it right now, but I wish I could.  I'm feeling a little prickly lately about being held up as this example of great, positive parenting in a difficult situation.

I'm prickly because when people say, "I don't know how you do it," I think to myself, "Really? How could you NOT do it, if this were your child?" Or I think, "Is our situation so dire, so pitiful, that you are amazed anyone could possibly handle it without falling apart at the seams?" I get prickly because I feel like I'm not allowed to be less than super;  that if I were a super mama, I would not get frustrated the way I sometimes do, with how slow Hannah moves or how hard some things are for her or what a challenge it can be to travel because she is less independent in places not specifically set up for her.

I guess I am having some pre-holiday, less daylight hours up north grumpiness.  Despite how great Hannah is doing since her surgery, and how much progress we see on a regular basis, she still has CP and we're just plodding along trying to make the best of it, and it is still is, and always will be, hard.


Tuesday, November 1, 2011

Grateful for this smile

Really, how can you have a bad day when you're around this smile?

Clearly, this is a happy kid.  So I guess we're doing something right.  It's good to keep looking at these when some days are a little tough, like today with me feeling a little beat-up after Halloween.  I do have the requisite cute kid in costume pictures to share, and everyone had a bucket full of candy, a good sugar high and an overall happy experience.

But there were parts of the trick or treating experience that I guess I blocked out from last year or didn't tune into, that were heavy on the trick side of things, at least from my perspective.

I forgot how hard it is to navigate the stairs, porches, and crowds of people.  I realized that trying to keep up with friends is not in the cards for us.  I saw that as Hannah gets older, having to be assisted up the stairs to get her treat is not something she's going to be that psyched about, so what do we do then? Last night she said several times, "I want to do it myself, Mommy," and then, "I wish everyone had ramps so I could do it all by myself."  It was a long night of walking, and lots of times Hannah had to be carried, piggy-backed or put in the stroller with Sam because she couldn't keep up.

If you were to ask Hannah if she had fun, she would give you an unequivocal "yes."  No doubt about it.  But do these little frustrations start to chip away at that tremendous sense of self? I don't know.  I hope not, but it's definitely chipping away at mine.

We did think of a new plan for next year, that will make it maybe a little bit easier.  First, we'll go on our own and see friends as we go, but not worry about keeping up with anyone else.  Second, we'll scope out a good route in advance, one that has a large concentration of houses in a small area, and maybe even some where there are not so many stairs to climb.  Third, I might even put out a plea somehow to ask folks to bring the candy down to the bottom step if possible, at least in the early evening when the little ones are out.  It's hard for a lot of kids to climb up and get their treat, maybe this would make it easier for everyone else?

The last one is a little more challenging, we'll see if I follow through on that.  I realize I can't go around changing every holiday so it's more user-friendly for Hannah.  But as her mama, I do want to try to level the playing field whenever I can. 

Anyway, I always like having "a plan," so that makes me feel a little better.  But that million dollar smile, that helps a whole lot also.