Mobility and Balance

We had noticed for the past five or six months that Hannah’s mobility and balance had significantly deteriorated to the point where she could no longer crawl, sit, or even roll over onto her stomach (or back).

We chalked it up to the progression of the disease.    She was spending a lot of time lying on the floor on her back or sitting in our laps.

Then we started decreasing the Klonopin about a month or so ago, and then this week some amazing things started happening.

A week ago, she rolled onto her stomach by herself.  We thought it was a fluke, an awesome fluke, but we didn’t put much hope into it.

Then she started doing it a bit more each day, just a few days ago she must have done it five or six times that day.

Two days ago, we noticed that she was actually propping herself up in her high chair, sitting straight up, while watching her Wiggles at dinner.  (We keep her at the table with us at dinner, leaning back in her high chair and watches her iPad).   These past few months, she would just lay back in the chair and watch.  But she did this three times that night!

Yesterday, she started rolling onto her stomach at least a dozen or so times and with ease.  I mean, with not anywhere near as much effort as a few days ago.   Her nurse even told me that she saw Hannah roll onto her stomach and prop herself up on her knees and then sit.  I was like, “yeah, right” and didn’t think much of it.

Then last night, as Abby, Ethan, and I were watching our evening shows and playing with Hannah, she was lying on her tummy while Abby was reading her a book.  Sure enough, she pushed herself onto her knees and into a sitting position.   Ethan, Abby, and I got so excited and were congratulating her and making an exciting big deal out of it because, let’s face it, this was HUGE!   (Daddy was asleep already but Abby was so excited she woke him up!).

Fast forward to tonight.    After the kids went to bad, Daddy and I hung out with Hannah in the family room where “her area” is.   (We have a foam mat covered by blankets where she hangs out).  She rolled from her tummy to back, scooted in different directions on her back with her feet, and rolled onto her back again for at least 30 minutes!   She must have done at least 20 or so complete rolls on her own and went the entire 10 ft x 6 ft area of hers!

As for her balance, she is even able to sit assisted (leaning her hands in front of her on something) and not fall over immediately.  Between this and her ability to sit up straight in her high chair means her balance is definitely improving too.

We don’t know what it is… maybe the decrease in Klonopin is giving her more confidence because her balance and control is better?  Maybe she had really just been feeling so crappy these past six months and is now feeling better?   Combination of both?

I don’t care what it is.  I’m just so glad to see Hannah taking the initiative to move around and get more control of her balance.   I don’t know how far this improvement will go, but I will take whatever we get.