Two steps forward…hopefully

Before Hannah got sick this summer, she was just starting to cruise around in her gait trainer.  She loved chasing the kids in her walker, and she was pretty good at standing for 10 to 15 minutes at a time assisted.

Fast forward to today… very weak legs, more significant hypotonia.  Right now, she can stand for maybe 30 seconds to a minute assisted.  Her ankles and legs just give way.   She can’t use her gait trainer anymore because not only does it rub against her gtube (which she didn’t have before), but she is just not strong enough to keep herself upright even assisted at this point.

She wants to stand.  She loves when we hold her up and she is on her feet.  She knows HOW to walk because she knows to put one foot in front of the other, and she does try.  But she just isn’t strong enough.

Last week we met with the orthopedics company that is going to order her a stander.   This would give Hannah the opportunity to stand completely supported, but with enough leeway that she would be working her leg muscles.  As a result, her legs will hopefully become stronger.  It comes with a desk so she will be able to play with her toys, her iPad, or read books while she is in it.

This afternoon, we are also meeting with the orthotics company who is going to measure Hannah for her SMO’s, the braces that go on her feet, over her ankle.  Her ankles are so weak right now that they bend inward at the slightest pressure.

Between the stander and the braces, we hope to be able to work Hannah about 10 to 15 minutes at a time and build up those leg muscles.

We know that Hannah likely will never be able to walk on her own without assistance.   We are okay with that.  But if we can get her to the point where she can at least gain strength and stand, even assisted, then it is worth it.

I have to admit, watching the two videos again that I mentioned above made me a bit sad to see.  She is just so different now, so much weaker. She loves to stand up.  You can see it in her face how much she likes it and how proud she is when she is doing it.  I just hope we get it sooner than later!