Starting Over: Day 12

Can you believe it?! She gave us 6 steps today!!!! AND we got it on video! The first video shows her taking 4 steps tonight and the second is where she pulled out SIX!! So cool!!

Starting Over: Day 11

Let me back up for just one moment.

Thursday, January 23, 2014, Day 8:

"And we have 4 independent steps again!! No straps repositioning legs this time. The steps are not very controlled but 4 steps is still a nice starting place!! WTG Peanut!"

I was/am impressed and really surprised. I am excited to see where she will go from here.


Here are some videos of her using the walker today. She really has built up a lot of strength but as you can see in the videos she is still crouching (some due to lack of strength and some due to tightness in her hamstrings, I'm sure) but over all I think she is doing well and look forward to using these videos to look back at later as we continue to track her progress.

Most importantly, she is beginning to see herself as a walker and is working hard to get better. She also will go for the walker rather than crawling, that's important.

Starting Over: Day 7

No real specifics to report but it is quite obvious to me that N's strength and balance are greatly improving. She's been using the walker for almost a week now but on school days she doesn't get much time with it since we only have one for her to use at home right now. Still she is doing very well and occasionally I have her walk our hallway using the walking sticks (and my assistance) just to be certain that she is using her legs and body to walk rather than her arms. I'm impressed. She's not where she was 10 months or so ago when she began taking those independent steps but certainly better than she would have been doing even last week.

I also believe her hamstrings feel looser though more so on her right leg than her left.

I have also found her choosing to sit or lay with her legs extended lately instead of pulled in which is really interesting and pretty cool. That straight leg time is so important.

And another important thing to note is her attitude toward walking has become more positive again. She is trying to do more things standing up as she thinks of herself as a walker. So important!

Starting Over: Day 3

Well, you would think that after 9+ months of no posted updates and having left off at one where N took 4 unassisted steps that I'd have some incredible news about progress...but I don't.

As a matter of fact, we had soon after found that we had plateaued...then N began losing motivation. We stopped the minerals believing there was no reason to give them if there wasn't anything left to come from them. And then over the past 9 months someone grew quite a bit, which is not so great for kids with CP. The end result? Loss of muscle strength, tighter hamstrings, loss of motivation, and we were 2 weeks away from her undergoing hamstring release surgery and possible de rotation of her legs. (but btw, her heal cords did not tighten back up, she still stands with a flat foot)

I ordered the minerals again hoping it would help with recovery after surgery, they arrived just 3 days ago. That very same day a trusted friend and therapist told me that she had begun to think differently about the de rotation surgery and perhaps N's situation is not severe enough for such a big surgery (it is something the doctor wanted us to consider too but agreed that we had several months to consider, and now here we were less than 2 weeks away with a possible plan change). My heart dropped. I don't want to make the wrong decision or a rushed decision. I immediately started her back on the minerals and decided to reschedule surgery for 7 months down the road (knowing I can always cancel it) and decided I wanted to change our approach to therapy.

In short, I want N using a walker and on the minerals. I could give a long explanation as to why but don't feel that is necessary right now, but will if asked.

In any case, it is Saturday morning. N started using a walker on Thursday and started the minerals on Thursday as well. This morning my mind is blown; her hamstrings feel MUCH looser than they have been! I am so incredibly excited about the potential of her experiencing the same kind of huge, quick progress again but this time with a different approach. I think the walker will help her tremendously and psychologically keep her motivated and seeing herself as a walker, as well as building muscles she wouldn't be sitting in a wheelchair.

I do not intend to keep a spreadsheet tracking progress daily this time but do hope to update this blog again on occasion.

Praying we won't even need to entertain surgery a few months down the road.