E Day 29

Walking with flat feet!

He has such tight hamstrings and has such bad habits in the walker that we hadn't yet seen him walking with his heels down but tonight we did!

E walking with flat feet - day 29




Compare to just a few weeks ago before we started minerals.

Take 3

Not sure if I will have the time and energy to keep up on this blog but having been off the minerals for a loooong time we are going to give them another try.

2 years ago we added another child to our family who also has CP. E is now 5. 3 weeks ago we started him on the minerals and like N his heal cords are clearly releasing! This brought me back to this blog where I was reminded of the incredible progress N had on the minerals both times. Unfortunately she now is beyond released at the heal cords (happens with surgery too so likely would have happened whether released by surgery or minerals) and with her growing like mad (she is 12 now), which means growing faster than her hamstrings can keep up with AND heavier on her ankles, she really needs her ground reaction DAFOs to be at a 90 degree angle to even give her the possibility of standing up straight, however, that is not currently what she has. Both N and E are scheduled for SDR (Selective Dorsal Rhizotomy) surgery this summer. Now we prepare for great success!

So here we go. (I will try to track both kids on this blog)


E is currently on DAY 26
N is starting back on DAY 1

(pics of E standing at sink taken on April 5, 2017 & April 13, 2017)

Here are recent videos of the kids, originally taken for the purpose of having pre SDR surgery levels. 

(the dates are wrong on the videos, was actually March 19th but doesn't really matter)

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.

Day 107

For the 1st time today N was able to put herself into criss-cross-applesauce without any assistance! She did it several times to show us her "new trick." She was so proud…as she should be!

 

 

 

DAY 95

N playing XBox Kinects Disneyland. We bought a NEW, CLEAN can, used table tops drilled through the bottom (inside and out) to stabilize it, put N in wearing knee immobilizers so she can safely practice indepence balance. She loves this game!

 

 

 

 

 

 

DAY 94

Today at therapy N walked some with the sticks (with assistance) and then the focus turned to helping her get into better alignment. As you can see in these videos, she is wearing knee immobilizers to help with straight legs instead of crouching, snow shoes to keep her from putting her weight forward (and easier to slide on the carpet seeing that knee immobilizers complicate walking), and a swash to help her from clinching her knees and thighs together and give her better hip alignment (you can see on the video of her walking with the sticks down the hallway with me her left hip keeps leading out).

So in therapy with all these supports to help with proper movements she practices walking without using her hands for support by having the therapist behind her for balance support if needed and then with the giant ball, also for balance but would definitely not work to support her weight as it would cause the ball toroll away from her. She's a bit tired by the 2nd video but I wanted to share it because I expect to be able to show improvements in the near future.

DAY 93

Just for kicks I gave N walking sticks to try walking WITH assistance to see what kind of gains she may have made. Much to my surprise she was practically walking with the sticks on her own! I was holding the straps of the walking sticks but even balancing was mostly on her own, with minimal assistance.

THEN she wanted to try it on her own...AND SHE DID IT!! N walked using walking sticks COMPLETELY UNASSISTED!!! This shows a tremendous increase in core strength (in order to be able to balance) as well as leg strength.

DAY 91

In the morning I had N sitting on the closed toilet while I brushed her hair. I left the room for a moment and when I returned I found her standing on the other side of the bathroom....she stood up from the toilet and used the counter to side step across the room. NEW! 


N's PT worked with her on pumping her legs on the swing (a toddler swing which offers back support). She was successful and VERY excited about this new progress.

Day 60

Great work today, N!!

And N continues to now walk to and from her booster seat all by herself. Boy, our lives just got a whole lot easier!

She did amazing at therapy too! Sorry for the dark video...she is not leaning against anything but there is a bench right behind her to give her the feel of added security if she felt the need to back up against it.

Day 53

New PT goals written less than 2 weeks ago...already met and EXCEEDED!!

Here is N in ONLY knee immobilizers, standing in the middle of the floor, engaged in an activity that requires minimal weight shifting. Way to go, N!! Sooooo sooo SO awesome seeing her standing and playing independently!!

In the second video N has one short knee immobilizer on (makes it a little harder) and is doing a more involved (more difficult) activity, so she is standing up against the wall to help her work on her balance independently.

Also, her PT periodically does a knee contracture measurement. This is how it was explained to me on what we are measuring, "how straight her knee can get (she has a knee contracture in addition to hamstring tightness)  The measurement is knee extension in supine." So the measurement is taken while she is lying flat on her back (supine).

The measurements can vary due to human error, her fighting it (or anxiety), or a better leg straightening exercise and "stretch" (in quotes because it is more of a warm-up and loosening) before measuring. In any case, while you will see the degrees bounce back and forth a bit, there has overall been tremendous progress (the goal is 0). I hope to have numbers to post in relation to her hamstring tightness soon.

9 Sept 2012 (Pre PGP)
Right: -16
Left: -28

19 Nov 2012 (PGP Day 11)
Right: (no measurement recorded, oops!)
Left: -18

26 Nov 2012 (PGP Day 18)
Right: -21
Left: -18

27 Dec 2013 (PGP Day 49)
Right: -15
Left: -18

31 Dec 2013 (PGP Day 53)
Right: -10
Left: -14

In retrospect, we really should have taken measurements the night before starting the PGP but we didn't. :( In any case, we are thrilled to see from Sept. through the rest of the year (as shown above), her right leg went from roughly -16 to -10 and her left leg went from approximately -28 to -14!!! Nice!!!

Day 49

Day 49: Very exciting progress in PT…N stood all alone for several minutes in knee imobilizers and snow shoes while participating in activities that required turning/twisting in her torso. Great strength improvement in her torso and legs, and impressive balance.

(compare to Pre PGP video when tall kneeling and moving rings!!)

Day 42

Day 42: In therapy N showed continued improvement in core and leg strength.

(compare to Pre PGP video when shooting basket from bolster)

Day 39

Inside the can N is wearing knee immobilizers and snow shoes. This activity requires her to use her own strength and balance to pull away from the wall and not fall foward.

Day 36

Showing off by standing with knee immobilizers and ONE walking stick!!
And whose flat feet are those?? Could our huge obstacle of plantarflexion (toes pointed) now become an issue of dorsiflexion (beyond flat foot, over extended beyond the ankle)? Apparently this is signature for kids with diplegia but usually after heel cord surgery!! Did you read that? Her body just may be doing what is typical of someone with diplegia who HAD surgery!! She has had no surgery! Her brain made a switch or something! So time to start working out those calf muscles (which she currently has nearly none). So 36 days of taking minerals and has similar results to what one would hope surgery would achieve. Amazing!!!

 

Day 35

Look who's standing using walking sticks and knee immobilizers! Nice balance!!

Day 32

DAY 32: N's core strength in PT was noticeably increased by her ability to continuously hold a tall kneeling position while moving her arms in and out playing Zoom Ball. She also pulled herself up to the bathroom counter and walked her self in closer. She remained there washing her hands for approx 5 min. Her feet were flat and her crouching was minimal. Impressive improvements!!

Day 21

DAY 21: Core strength continues to seem stronger while doing PT. I was shocked to find her turned and sitting up on her bed because she had knee immobilizers on and AFOs, she had been placed in her bed on her belly. She could have never managed that before. Incredible!!

 

The Night BEFORE PGP