DAY 115

N took FOUR unassisted steps today for the first time!! No walking sticks, no knee immobilizers, COMPLETELY unassisted!

DAY 114

N took TWO unassisted steps today for the first time!! No walking sticks, no knee immobilizers, COMPLETELY unassisted!

DAY 112

For the first time N put herself on the potty with ZERO assistance!! She crawled to the bathroom counter, pulled up to standing, cruised (side stepped) to the other end, undid her pants, pulled them down (while standing and holding on), positioned herself closer to the commode, then used her hands to lift up and back to position herself properly. After having some assistance upon completion, she has brought herself back up to standing off the toilet and to the sink and made attempts at redressing herself! Later she went from spilt kneel to standing using the counter to help pull up BUT she has not even able to position herself in half kneel position on her own before!!! She's a rock star!!

DAY 109

N was positioned to half kneel by PT with left leg forward, she showed tremendous improvement and strength while maintining proper positioning even while she twisted at the waist to watch a video placed behind her.

 

 

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 104

Increased muscle tone in her glutes and abs are undeniable!! Really impressed and surprised by her tone and muscle definition.

Her handwriting has noticably improved…perhaps from more trunk/core control??

DAY 101

N is pulling up to standing and cruising a whole lot. Today she did so in the kitchen and cruised from one end of the counter to the other so she could steal a cookie of the plate :) She then spent maybe 30 minutes standing at the coffee table playing with a friend without being placed there as a therapuetic activity. Her legs were crouched but I'm believing this has more to do with signaling from her brain as opposed to strength and ability.

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 94: So Now What?

So what next?

Are other kids with CP likely going to start walking with sticks or crutches so soon after starting on the trace minerals?

Two very good questions, and both questions I want to answer as publicly as possible to those interested in N’s most recently discovered progress; I only hope that my “parent” response will do N’s therapists more educated thought process justice. I’ll try my best but this will probably get a little long so bear with me.

When we adopted N at 3.5 years old from Ukraine, she could only sit up if in a ‘W’ sit. Her hamstrings were very short and tight, as were her achilles. However, having seen other kids in similar or even worse condition be put on walkers immediately upon coming home, I was certain she would too. We even went to Shriners and they did give her a walker right away, but we never did end up using it. Why?

The therapists we work with approach this area (and likely others, I’m sure) of getting kids with Cerebral Palsy up and walking, much different than most other therapist and doctors. I know this for certain because I have not met anyone online or off (and I know hundreds of people online through the adoption and special needs community) that have withheld a walker from their child with CP and this is not what their therapists have been suggesting for their children. The variety of doctors and school therapists we’ve dealt with are not in agreement either…and let me preface this by saying that I, personally, am not saying that every other way is wrong, I’ve seen lots of kids make great progress and begin walking independently after using a walker, but the approach by which we have agreed to pursue is different.

Here are some of the thoughts that support withholding the walker…

• When you first give a child with CP a walker they usually use their arms, instead of their legs, to stay up; the walker moves and their little legs try to keep up, there is not much control like “true” walking.

• Usually the kids legs look a mess when they are handed a walker. They may be up on their toes, legs turned inward, knees/thighs clinched together, legs crouched, etc. A body walking in such poor position isn’t going to last 80 years like that; it wasn’t designed to. To my understanding, many of these kids “walking” with such bad positioning while young will find themselves in wheelchairs permanently by high school or young adult age. The body begins to wear down.

• With improper positioning and learning to walk using their arms to hold them up, kids are less likely to get to a place where they will become able to walk independently, using just their legs with no upper body support.

I ’m sure there is more and could have been better explained but I think that explains it in a nutshell.

So rather than hand N a walker just to get her up and moving without the assistance of another person we have been approaching it this way…

·        With the use of a stander or knee immobilizers (and AFO’s of course), we get N up and standing so her body is bearing her own weight, which everyone agrees is important for strong bones, but proper positioning is key to building the right muscles for standing. Kids with CP will use various other muscles than the ‘typical’ person to do things, such as standing or walking, to compensate for their weaknesses, tightness, and spasticity. Building the proper muscles for each activity will help the child to be able to do it more typical movements.

·        Using and building the proper muscles will help bone growth to be more typical. For instance, N’s left rib cage on the bottom the bone curves outward. It has been getting better as she builds her core strength because the muscle is now pulling down, as it should, and “molding” the bone properly, when previously the muscle was not strong enough to do so. This would be the case for all the muscles in the body, as they pull or are used, they mold the bones, and of course, we want her bones to be molded as the body was designed to be.

·        As with using the muscles more typically and building strength, the same would be true for stretching muscles and tendons. If we want long hamstrings, we need to be stretching the hamstring regularly. We can spend ten minutes a day doing a stretching routine or we can do activities daily that support proper positioning that “naturally” stretch and build muscle where the body needs to for more typical movements. Using a walker with improper body positioning would be the opposite of this.

·        There is also the component of needing to teach the brain how to operate the body. Think about someone who has not used a muscle in a long time, maybe been in a coma for a month (have a friend like that) and then needing physical therapy to not only build the strength to walk again, but remembering how, getting the correct message from the brain to the muscle. Even with N, when we first adopted her, she could not crawl using alternating legs but did more of a bunny hop, bringing both legs up at the same time. She had to learn how to dissociate those legs to work one at a time. We are still working on that for the split kneel. With learning to pump her legs on the swing, therapeutic techniques are used to help her identify which muscles to contract in order to produce the proper in/out movement of her legs. So with various activities, using proper body movements, such as riding an adaptive bike, standing, or even walking with knee immobilizers on, help retrain the brain for proper use and movements.

Again, that’s just some of the thinking in a nutshell (my best parent understanding and explanation, anyway).

Here is a pic of N's legs when she is relaxing. It's certainly not how we want them to be when she is standing. So in addition to AFOs we use strapping to position her legs correctly throughout the day. This is especially important when she is doing any standing or walking (as she does with assistance for therapy).



And here are some pics of her ready for bed. She wears knee immobilizers to give her nearly 12 hours of straight leg time (especially since she spends the majority of her day sitting or crouching) to get that lengthening. She also wears her SMOs to bed (if she had new AFOs she'd be wearing those instead but we have been holding off on ordering those just yet because of her rapid progress on the minerals). And she wears straps that help rotate her legs out at the hip as they should be. She sleeps on her stomach to not only help with the straight legs (because of gravity) but mainly to stretch her hip flexors, also made short by crouching and sitting all day.

With all of that said, this is why when N started taking the trace minerals, she was not already using a walker but rather, the wheelchair…and still is. The minerals have done a TON of good for her that cannot be denied. For one thing, N’s achilles were so short and tight, she could not be positioned to standing with flat feet. Now again, a difference of approach, she was not placed into typical AFOs that would “force” her into a flat foot position like most kids with her CP issues would be. The reason being is that it would have further compromised her ability to get out of the crouching position. Instead, N has been wearing AFOs with a built up heel lift on the underside. So just like we typically wear shoes with a bit of a heel, so were her AFOs. The thought process to support this approach is that our desire has been for N to learn to put her weight back in her heels and to get away from toe walking, all the while beginning to stretch her achilles and hamstring little by little. The goal was to eventually work our way down to a flat standing (for lack of knowledge of the technical words for that lol) once those areas were lengthened and she learned to put her weight back in her heels she could wear typical AFOs. Much to our surprise and tremendous delight, less than 3 weeks on the minerals N was suddenly able to have flat feet while sitting and when positioned to standing. We were able to ditch those AFOs with heel lifts without needing heel-cord surgery!!

But the thing is, of course every kid and situation with CP is different, there is no way to say if N would have been using a walker that should would or would not have accomplished what she just did using the walking sticks this weekend. My best guess is that she would NOT have. She likely would have had much worse positioning, not have learned the balance she has because she would have been practicing on the walker incorrectly, and would have needed her arms more for balance…with walking sticks that could be pretty disastrous.

So now what? Will we give her walking sticks and just let her go (not that she’s really ready for that anyway but..)? No. Actually, her therapist would not be thrilled to see her just take off with the sticks and still be somewhat crouching, or become too dependant on the sticks for balance. However, we are all in agreement that we need to change up some of the things we are working on to get her to be able to use the sticks in a more proper alignment with the goal of going down to one stick to none. Will I still sneak a few trips down the hallway with N using the sticks each day even if her therapist doesn’t completely agree, and I don’t know if she does but she will read this anyway (LOL!!)? Hell yeah! I don’t want to get into a therapy battle, and I’m not talking about between me and the therapist…God, I love her therapist…but I mean, practicing movements that could be opposite of what we are trying to accomplish with proper positioning and therefore further stalling progress (with that “progress” being PROPER independent walking).

I have to say though, this has been quite the confidence boost for N…for all of us. She WANTS to not just do it, but do it right, pushing through her heels and extending her legs and back the way we’ve been working on in therapy. The motivational component is key to her success…to anyone’s success. She needs not just to be motivated but with the right goals in mind, not just walking but walking in a way that will get her to be able to run outside with her friends, to dance, and to be able to do all these things for many, many decades. This most recent success only confirms to me that we have made the right decision in our approach to N’s therapy. I see her walking using the sticks for limited balance assistance, very soon. I also think that before the school year is over, she is going to stand up and take some steps from her chair at school with or without permission…so if we want her to do it with the proper alignment, we best bust our butts to get her to that point because when she’s ready to walk, she’s gonna do it and not one of us will stop her…I wouldn’t even want to try.

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 92

Again I left N on the toilet for a few moments to return and find her standing on the other side of the bathroom again...again she held the counter and side stepped across the room!   


N's PT positioned her in a split kneel position on the floor where she was able to reach up to a table. It took a decent amount of work on the PTs part to get her into the proper positioning but in all fairness, this is not something that has been worked on in a very long time. Once there, she held position well leading with her right leg but struggled more with her left.

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 85

Started back on 5 tsp of minerals. No evidence of regression over the past week. No regregression was observed during her time off. No complications were observed when we restarted. Increase in core strength observed afterr approximately 1 week back on minerals.

DAY 79

Although N's progress continues, the rate of progress has slowed significantly over the past few weeks since beginning the minerals. Having observed other posts on the PGP forum of kids being taken off the minerals for 1 wk due to unrelated illnesses then seeing an increase in progress again once restarted, I have decided to withhold the minerals from N for 1 weeks and then begin again.

DAY 67

N walked to the bathroom with the palms of her hands on mine as she maintained her own strength and balance. Wow!

DAY 65

Upped her dosage to 5 tsp. She was on 3 tsp for 7 wks, 4 tsp for 4 wks, just feel like we should be increasing so we are giving it a try.

Day 62

Because I posted about N wearing the long and short knee immobilizers at night in yesterday's post, I thought an update would be necessary. N did not make it through the night with the long knee immobilizer on her right leg. She was crying that it hurt. Of course we took it off, assuming

Day 61

N stayed in her stander for over 2 hours!! I hadn't planned it that way and usually take her out after an hour but life got busy and we weren't watching the clock. The thing about this is that she did not complain at all and was completely happy to play, eat dinner, and do homework in her stander. When I took her out she didn't giggle uncontrollably as she does when her legs hurt or feel numb! After a minute or two lying down, I helped her walk to the bathroom. It was not a far walk and I assisted quite a bit but the fact that her legs didn't just collapse under her or her complaining that they hurt or she couldn't do it is AWESOME! My girl is definitely getting stronger. What great progress!!

We started using the longer knee immobilizers at night when she sleeps because they keep her legs completely straight, better than her small ones. However, her left leg is not quite ready for such long time straight leg positioning and she can't make it through the night without tears. So tonight I decided we will use the long knee immobilizer on the right leg and continue to use the shorter one for her left leg for now. She's been such a rockstar with all this  hard work and adjustments, I certainly don't want to push things to a point where she is miserable...attitude is everything so lets keep her smiling!

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 59

Having added another young child to our family recently N's booster seat had to be moved to the backseat bench because the carseats won't anchor in the back; this makes getting N in and out of the van a little complicated. However, today when we parked the van and the teens hopped out to get her wheelchair and the younger girls from their seats, N took matters into her own hands. :) She unbuckled herself, stood up and WALKED between the middle row seats, around the front of one, to me at the door!! Wow! She looked great! Of course she was holding on but wasn't crouching and was standing tall. Later in the day she did it again. Must be on to something new!!