An Independent Walker, Cerebral Palsy Won't Stop This Girl!

Two years ago Nina had a Selective Dorzal Rhizotomy. It basically means that half of the nerve rootlings from her spinal chord were cut.

She has spactic diplegia cerebral palsy, which means that mainly her legs were affected...and they were really affected. The truth is, we had very little hope of her ever walking independently. In the picture bellow you can see how high she was on her toes, and that was her trying to get her heels down, mostly her weight was on her big toes. You can also see that even with her braces on, her heels did not touch the floor, she was still high on her toes.

But Nina is a fighter, a survivor, and she is walking independently. That is, most of the time, except for very morning at school as she walked down the hall to her classroom.

Well, this morning we realized her teacher forgot to drop off the walker in the office, where we usually pick it up. I told Nina to go ahead and begin walking while I got checked in so I could help her. it turns out, she did not need my help.

Yeah, today, I am claiming my daughter to be an independent walker! Watch her go!

I think soon she will be running!

Nina is doing a phenomenal job with her walking. I cannot believe that it will be almost 2 years since she had a rhizotomy. Sometimes, I really do forget she has cerebral palsy because she is becoming more and more independent.

She is walking all the time, on her own, and loving it!

Here is a video of her walking. Now, her gait is far from perfect. Her right leg is almost completely turned in, making her knees touch every time she takes a step, and her right foot is completely facing to the left. She hips are rotated and she needs to swing one arm to balance that difference.

We are headed to Mayo clinic and discussing her next surgery coming up this summer. It will be pretty involved as we deal with her hip displagia, bone malformation, and short muscles that need to be released a little. Just thinking about it makes me cringe for my girl, but the difference it will make in her gait (the way she walks) her balance, and her ease of movement will be so great for her.

Nonetheless, here is my girl, and you better believe we are incredibly proud of her!

Where is the Walker? {and a CP Connection}

Nina has been a part of the Preemie Growth Project since last October. For 4 months, she has been taking extra minerals every day. While it is easy to miss the changes taking place, I am reminded of her increase in strength and stamina since she has not used a walker at school since last Thursday at school.

Today, as I quickly talked to her teacher, we agreed that the only reason she needs a walker is in the morning, as the hallways are crowded and it is more of a safety issue. Other than that, Nina is completely on her own.

When she began Kindergarten, a year and half ago, she came to school in her wheelchair. Just 18 months later and she is walking all over her school.

Simply amazing!

Time for a CP Connection! Link up if you blog about cerebral palsy! Jut make sure to link your post back here so we are all one big happy CP connection




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This girl can jump! Cerebral palsy won't stop her.

Cerebral palsy is one of Nina's greatest challenges, but although it is a challenge, cerebral palsy is also one of her biggest character builders. That was not always the case, when Nina first arrived home after we adopted her, she had a "victim" mentality. "I can't," were her first English words and oh how we pushed this little girl to take ownership of her abilities.

Last April (17 months ago) Nina had a rhizotomy. We spent the summer going to therapy every day of the week, and eventually were able to cut down to 3 times a week. Still, by the time Nina began Kindergarten, we were taking her to school in her wheelchair, she used her walker only in the classroom. Little by little, she began to gain strength and walk independently, the wheelchair became a means to get her from the car to her classroom only and back again.

We know the rhizotomy made a huge difference. This surgery gave her legs the possibility to walk by greatly reducing her spasticity (tightness). We are convinced Nina would not have been able to walk independently without some type of asistive device if it wasn't for this surgery. She was tight, tight, tight! But we are also convinced that when Nina saw what her classmates could do, and that she was being left behind, something inside of her became determined. Cerebral palsy? She was not going to let that stop her. By the end of the school year, Nina was walking independently all around school, without her walker.

Then summer came and therapy stopped (she received therapy through school) I tried to get therapy for both my girls through a local place here that supposedly works with kids in the summer. That didn't happen for unknown reasons to us, but that is a different story. Nina regressed during the summer, her confidence was not the same, her stability was not the same, her endurance was not the same.

As a mom, I felt discouraged.

Then school began on Wednesday, and I was hoping that within a month we could get back to the swing of "movement" we were at before.

Well, I guess our little determined girl decided to take it up a notch even more. She has decided she will not only work on her walking, but her jumping to. If you know anything about cerebral palsy, you know this is quite the accomplishment.

So here it is, our determined girl that won't let cerebral palsy stop her, her character builder for determination and courage. Jump sweet girl, jump! Oh, and this girl jumps with her own style, because she likes to move it!

One Year Post-Rhizotomy Gait Analysis

Yesterday Nina had another gait analysis to check on her progress one year post-rhizotomy. Last year she needed her walker, this time, she walked all on her own.

Please excuse the out-of-control nervous giggles. She really has no control once she gets started and she knew she couldn't fall because of the "space stickers" she had on.

She also got to do some walking with her braces on. It is simply incredible that this girl is finally walking!

I think it is fun to see the "gear" Nina had to wear.

Besides the "space stickers" Nina had some sort of "microphones" on her legs so they could hear her muscles "talking." Now I don't know the real terms for what these are, but the explanation they gave to Nina makes sense to me! They really do get a lot of information about what her body is able to do by "listening to the muscles." You can see in her leg what those gadgets looked like.

In a couple of weeks we meet with all the doctors at Mayo Clinic and we talk about what is next for Nina. Most likely we have another surgery in the future. Nina's spasticity was pretty bad and even after cutting 60% of her nerves, she is still tight. One thing at a time. For now, it was just fun to see the doctors wow at the difference in all her measurements from last year.

The on PT was not thrilled with Nina's braces. We don't like them very much either. She mentioned they don't fit Nina well and had some recommendations on what to do until we can get her different braces. So we shall do that too.

And I want to say THANK YOU to all of you that have kept Nina in your prayers as she had the surgery and as she has learned how to walk. Your prayers and support have been an incredible gift. Really, we are so grateful for you.

Courage and Determination

I have seen great people achieve great things. I have seen athletes push the limits and break world records. I have seen the sweat and tears that come with difficult tasks and the pleasure of seeing those things come to fruition.

Yet I have seen more courage and determination from a little once-orphan-girl that I now have the great pleasure, joy, and honor to call my own. Abandoned at birth, raised without a family, yet now loved and having a place to belong.

Cerebral palsy does not own my daughter. She is a fighter. She is courageous, she is determined!

Almost a year after her rhizotomy (SDR) and look at this girl go!

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Who Will Win Today? and CP Connection # 3

Who will win today? This is a question I started asking Nina. Is Nina going to win, or will Cerebral Palsy win?

It is like Nina is in a boxing match against her CP. She swings her little arms hoping to punch her CP, but sometimes CP comes at her with  a fierce vengeance that knocks her down.

Nina started walking with no braces, just her bare feet. This is really great progress, it means she is getting stronger and balancing better. Without her braces her left foot pops up and she walks on her toes, but she is walking, and that is always good! Actually, it is great!

The puzzling part is when she does great and the next day she just cannot do it. She gives up, she believes it is too hard, even if she has done it 10 times before. So, in an effort to try to encourage her, this is an example of a conversation we might have:

Me: Who is in charge of your body? Cerebral Palsy, or Nina?
Nina: I don't know.
Me: Can Cerebral Palsy walk?
Nina: No
Me: Can Nina walk?
Nina: Yes!
Me: So who wins, Cerebral Palsy or Nina?
Nina: Me! I can walk!
Me: Yes! And Cerebral Palsy cannot stop you from walking! It tries to stop you, but it can't! We are beating Cerebral palsy, we are winning! We are showing it who is the boss of you!
Nina: I am the boss of me!
Me: So every time Cerebral Palsy wants to stop you from doing something, you need to show it who the boss is!

I am not sure how this approach will work, but the more we can get her to take ownership of her abilities, the better and better she will do. We don't want CP to be something she sees as her "enemy" but we also do not want her to be beaten by her disability. She can do anything she sets her mind to, and slowly, we are making progress. So the last few days as Nina has been taking independent steps without her leg braces, it is encouraging to see that. Slowly, slowly, she is showing Cerebral Palsy who is the boss of her body!

I would love to hear from young adults and adults with Cerebral palsy. is this an okay approach? I do not want her to be resentful of her CP, but I want her to take ownership of her abilities. What would you advice?






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Linking up? Don't forget to link to a specific post and not your entire blog. If you visit the other blogs, maybe you can leave a comment and let them know you stopped by. And don't forget to add the blog button so you can link back here. You can always click HERE for a more detailed scoop.

CP Connection #2

With a New year, we are looking forward to some new exciting things for Nina. After her 6 month post-rhizotomy follow up at Mayo Clinic, we have some goals and lots of work to do. Hopefully we will get Nina back in private therapy because she needs it in order to accomplish these goals.

1. Nina will walk 20 feet independently with braces and shoes in 4 weeks.
2. Nina will ambulate with forearm crutches with contact guard assistance for 25 feet in 4 weeks.
3. Nina will transition from sit to stand independently from bench (90/90) in 3 weeks.
4. Nina will increase hamstring length to 35 degree popliteal angle.

Pretty exciting to think about, although 4 weeks sounds a little intimidating, but we will work hard to accomplish these goals. It would be great if her next gait analysis is done with her crutches and independent walking.

Some new 'toys" for Nina include:

Glasses: Nina has a new prescription and new glasses. We stayed with blue, because she likes blue glasses. She has such a small face that finding frames is difficult. But I think these are pretty cute. If you know of some good deals on bifocal glasses for kids, please share!

 

 AFOs: Nina finally outgrew her first air of braces. These new friends of hers are pretty sweet, not only because they have butterflies, but do you see how they seem to be in an angle?

 There is a plastic piece that connects the bottom and the top of the AFOs. This little plastic piece provides quite a bit of resistance, so when Nina stands, she has to really push and make her legs straight. When she takes a step, her toes come up, being pushed by that plastic piece in the AFO. This is making her take steps and make contact with her heel first...for the most at. We have never seen heel-toe steps, all we saw were toe steps or straight down, but never heel first. These AFOs are awesome!

 There is a down side to these awesome AFO's. The extra little piece there that makes Nina step so well, also makes her braces very wide. So wide indeed, that we have not been able to find any shoes that go over them other than Crocs.

 So here is a video of Nina walking with her new AFO's. If you pay close attention you will see there is heel first contact in her steps, especially her left.

 Forearm crutches: And they are pink! Okay, they look salmon, but it is a shade of pink so we are happy. This was Nina the first time she held them. She was very nervous.

And here she is, practicing walking with the crutches. We have been told it takes 2-6 months to learn how to use them. I believe that!

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Now it is your turn to join in the CP Connection. A few things to remember, make sure you add the CP connection button at the end of your post, that way we can all be "connected" in one place. Take some time to visit the other blogs and leave a comment if you are able to. You can click here and read the guidelines in how to connect.

First Steps Take Courage

Photo Credit

There was no hesitation, no wobbly steps, no loosing balance. When Ellie began to walk, that is what she did. She walked.  She pushed herself to a stand in the middle of the kitchen and walked straight to me. A first that somehow defined precision.

Nichole, on the other hand, had muscle tone to conquer. Low muscle tone is one of the characteristics of Down syndrome, so we knew walking would take a little bit longer. Moreover, a lot of work; with a good measure of determination. Physical therapy became a regular part of our weekly routine. Nichole would dangle from a harness over a treadmill where we worked on walking. We did this for months. At first, she would only walk using a push toy. She was going to walk independently in her own time. Not ours and not her therapists. Her own time.

She was almost 2 years old, and I feared I would miss her first steps. We were heading to Ukraine to adopt our third daughter, and the thought of missing a milestone we had worked so hard to achieve felt devastating. A few weeks before getting on a plane to fly across the globe, Nichole stood; she took 3 wobbly, unbalanced, clumsy steps and fell down on her behind. I jumped, I cheered, I clapped, I cried. She clapped with me, pride exuding from her 23-month-old body. A first that somehow defined triumph.

Now I have a third child. One that makes me long to witness those first steps one more time. Nina’s body, tight from Cerebral Palsy, fights to find balance, coordination, and strength. Her Kindergarten friends run free in the playground, they move around without restrictions. Nina watches. I know she wants to walk. Fear and lack of self-confidence tie her down to her wheelchair. Her walker gives her some independence, but her stamina only lasts so long.

Nina wears resignation around her neck; she does not want to take it off.  She spent too long left alone in a crib. Without someone that would believe in her, in her potential. Her first English words were “I can’t!” And my heart breaks for her. The powerful message she received in a cold orphanage in Ukraine continues to whisper in her ear, “You can’t!” Nina believes it. However, I am not giving up on her.  I will be her legs if I have to, but I will teach her to use her own. We will cry, we will be frustrated, and we will get tired. But I am not giving up. I am her mother. Some day, she will walk independently. Some day, she will believe that her body can physically do it. It will be an emotional first. A first that somehow will define courage. 

Her first steps...

I wrote this essay for my writing class, before Nina started walking consistently. We still have a long ways to go, and we have to constantly remind her that she can do this. But overall, this little girl has taught me more about courage than anyone else has.  She is one incredible little girl, and I am lucky, so very lucky, to call her my own!

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When "Cute" Makes a Difference

Nina has a prescription for forearm crutches. It is exciting that she has gained the balance and strength necessary to use them. The walker has been great, but Nina's gait (the way she walks) is just painful to watch. She hunches down, elbows bent, legs bent, and she drags her feet. Let me tell you, she can go fast! But the point is to get her to walk properly. Her body needs to learn how to move.

The piece of paper with her prescription is a symbol of moving forward. It is exciting!

I stopped by to order her crutches, and I realized quickly, that our options were based on shades of gray that screamed: "I am adaptive-medical equipment!"

"Can we get them in pink or purple?" I asked

No. No we can't. Insurance will only cover certain models, and "cute" is not their priority. I get that. What I don't get, is that there is no difference in cost. As a matter of fact, the crutches that were recommended to us, the ones that are "cute," the ones where we can chose a color, are more affordable that the ones that insurance would cover. But it doesn't matter, because it is what it is.

The thing is, sometimes, "cute" is significant. When Nina is in her wheelchair, people stare. A small child in a wheelchair seems so sad, yet it is equipment that allows her to be independent and go long distances. She got to choose the color, and she loves that about her wheelchair, it is her very own. We have seen lots of walkers, and Nina really notices them. She can tell you which ones she likes and which ones she doesn't like.

All the medical equipment we use is part of who Nina is. The wheelchair, the walker, and now the crutches...those are her legs! Sure people will stare, but if she likes them, if she thinks they are "cute," if she gets to pick a color, then it really doesn't matter what others think. For her, crutches are an accessory; like a bracelet, or a necklace. She wears them proudly.

We walked out without ordering gray crutches. We will call insurance and try to figure it out.

It amazes me, really, as I learn to parent Nina and navigate the world of Cerebral Palsy, how small things can make such a big difference. But we do it, and we try, because we love her. Because we want her to feel confident and secure. And yes, sometimes, the reality that she had nothing at the orphanage makes me want to give her the very best. And this time, it is colored crutches.

Mayo Clinic. Post Rhizotomy. Update

We had a full day today at Mayo Clinic. It has been 6 months since Nina had her rhizotomy, so she got to see the team of doctors and therapists that have been working with her now for almost 2 years! I know I say this every time, but we love Mayo! There is a reason Mayo is considered one of the best in the world.

The quality of the people that work there is the best. Nina is not simply a number, they really do care about her and our family.

We got lots of great suggestions on things to be working on. Lots of great information and referrals too. For example, Nina will be getting new leg braces. She will also be getting fore arms crutches...but now I am getting ahead of the game!

All the doctors and therapists were very pleased with the outcome from the rhizotomy. The fact that she began walking last week was the icing on the cake! Cerebral Palsy sometimes talked about in stages or "involvement." This is given using a scale of 1, 2, 3, 4. Number 1 being "mild" and number 4 being most involved. Nina's spastic diplegia fell into a stage 4, or what you might call, most severe. What her body is able to do now is incredible!

Nina had some bone contractures that seem to be resolving on their own. This is exciting because it means surgery will not be necessary to correct those in the future. We did discuss a possible surgery during the summer. Nina does have bone deformities, and these will most likely have to be fixed. In April we will do another gait analysis and decide all that needs to take place. Hopefully, by then, we will only have to do one surgery and there will be no need for muscle lengthening procedures (this is where they go in and cut a muscle, therefore releasing the tension caused by Cerebral palsy...sounds pleasant, huh?)

I have mentioned before I have a love/hate relationship with Nina's walker. I love it because she can be independent, yet hate it because she does her worst walking with it. After seeing all the different doctors and watching her gait (the way she walks) we thought we would give fore arm crutches a try. They explained it takes kids anywhere from 2 to 6 months to really learn how to use them, but the key is to use them as part of therapy and at home because they really help with stability and gait. Two therapists worked with Nina as she used them. Her posture, balance and gait really seemed a lot better! While it would be great if Nina walks without any special equipment, right now stability and gait are important. I would much rather have her learn how to walk properly, that have her walk with poor posture and resembling a T-Rex. We will see. This is all new to us!

What a privilege to work with these wonderful people at Mayo Clinic as we all work towards helping Nina achieve her best potential!

The people at the Ronald McDonald house are also wonderful people! They serve the families here. They make us feel welcomed. Really, what a blessing this place has been.

She Is Really Walking!

Monday night Nina took independent steps. We were not sure if she would continue to do it or not. This girl has actually come from school every day and practiced her walking, because she knows if she gets really good at it, we are going to a toy store! She will walk independently in the store, and choose whatever toy she wants! And we will gladly buy her a toy as we celebrate this incredible accomplishment.

Go ahead, cry a little. You are witnessing a miracle, and the great beauty of those first steps.

Walking Sleeping Beauty

Today, for the first time, our family went trick-or-treating! The last few years we have been the ones to pass out candy. However, we knew this year with the girls in school we wold have to venture out and join in the fun. Besides, there is a reason Andy rhymes with candy...he is one happy daddy!

I could not find my camera anywhere to take pictures of the girls!

Nichole was not too excited to leave the house, we were having a meltdown. When she is dressed up, she likes to watch a princess show (yes, pretty much our dress-up clothes consist on different princess costumes). She sat on the stroller and held on to her basket with loud protests. Our first stop was enough to get her in the mood! I know what she was thinking, "You mean all I have to do is go to people's houses and they give me a piece of candy? I am in!" And in good-happy Nichole fashion she said, "please", "thank you," and "bye, see you!" to everyone that gave her candy. To the many people we saw, she waved and offered a great smile.

Ellie had a great time and was the only brave one to go to the "scary" houses. Two of our neighbors go all the way out... in a scary way!

Nina, well...this is what she thought of Halloween...

Yes, Nina decided it was a good day to start walking independently! For a lack of a camera I did the best I could at the time, which meant I was using my laptop to tape her. We are hoping this is it! This has happened 2 other times. Nina walks for a day and then, well, she doesn't. Maybe this time she will be walking for good!

If you are looking for the next post about our journey with Down syndrome, hang in there! I made a  "map" and I have 6 more posts to share. I will resume on Wednesday since one of our college friends is coming to visit for a couple of days.

If you are new here, I would love for you to share in our story. You can begin reading here: Road Marker 321. From there, you can click on the links to the next posts. As I have shared before, the next few posts deal with the "ugly" side of dealing with Nichole's diagnosis of Down syndrome. It has been quite the emotional experience to go back and read my journal. I was so mistaken about what life with Nichole would be like. I think about a day like today, as we go trick or treating, and how normal our lives are with her. And how charming she can be! It is sweet when your child stands out because she is demolishing stereotypes, showing people that kids with Down syndrome are more alike than different, that she is the cutest Cinderella out there, she is polite, and she has the ability to inspire love.

What did you do for Halloween? Did you get lots of candy?

Six Months Post Rhizotomy

It has been six months since Nina had her rhizotomy (SDR). I can get so frustrated, thinking that we are not making any progress. But the reality is that Nina's body is so different from what it was 6 months ago. It is absolutely incredible!

I have mentioned before that we have seen progress in her fine motor skills, her attention, her cognition. But the difference in her walk and gait, well, those are astounding! So here it is, I will show you before and after pictures. And remember, this is the difference from before the surgery, and now 6 months later. Absolutely incredible!

I want to show you the difference with no braces on, because that is how you can really see what her body is doing and how it has changed.

BEFORE

Her heels could not touch the ground. She was very high on her toes.

 Can her heels be any higher?

AFTER

 Can you believe these are the same feet?

 And she can even tap the floor with her heel! No toes, just heel!

As far as the surgery goes, the scar is hard to see.

BEFORE

AFTER

The following videos, however, make me emotional. The difference in walk and gait is absolutely incredible! Six months, it has been only 6 months!

BEFORE

AFTER

24 Weeks Post-Rhizotomy

It is hard to believee that it has been 24 weeks since Nina had her SDR surgery. I have not done a very good job at keeping updates on how Nina is doing. I am not the type of person that notices gradual process and I think that makes it hard for me to be objective about the changes in Nina. My initial thought is that things are the same, and that Nina has not made much progress. But that is not true.

A rhizotomy does not only help with walking and gross motor skills. Nina's fine motor skills are actually very good. The only thing she really struggles with are letters. She cannot get letters. Even when tracing letters she has a hard time. She can color and cut, she can draw a picture of a person, and her overall fine motor skills are almost the same as most 5 year olds. Pretty incredible.

We spend a lot of time focusing on walking. A couple of times we thought we had finally turned the corner and we were on the road to walking independently. There have been 2 different times where Nina has walked around the house. On her own. No walker. No help. At school, she uses her wheelchair and her walker. The teacher mentioned that she is beginning to cruise a little and taking small steps on her own.

There are times when it is hard not to get frustrated and wonder if she really wants to walk. We are not sure what it is that will give her the final push so she takes off. But as Andy and I were talking the other day, we realized that Nina is walking. She is actually walking independently, but she has no idea. She thinks we are actually helping her. The last few weeks Andy and I have been holding the back of her shirt with a reassuring "I got you." And she walks. On her own. For as long as she feels us right behind her and feels we are touching her shirt, she can do it. The thing is, we are not doing anything at all, just walking right behind her. If we let go, she feels it and immediately falls and looses her balance. At this point it is not weather Nina will walk or not. She can walk. She is walking! This is a battle of her mind, of believing she can do it. This, I realize, might take a little longer. Yet, we are encouraged, because this girl can walk. She is actually walking!

Nina continues to walk on her toes out of habit. When she uses the walker we remind her of that several times and she gets those heels down no problem, even without her braces on. I am not sure if this is just Nina or if it is common after a SDR.

In a month we go back to Mayo clinic for Nina's 6 month follow up. We are interested to hear what the doctors have to say when they see her again and what their future recommendations will be.

I leave you with a video of Nina walking this afternoon. With Andy holding her shirt. It is not the best quality video but you will see what she does on her own.

Don't forget to enter your name for a book giveaway "A Good and Perfect Gift" by Amy Julia Becker. Just click here and go to that post.

And tomorrow starts Down syndrome awareness month, I am excited! Stick around as I share our journey with Down syndrome for the last 4 years!

What She Is Up To Today

The Theratogs have really helped Nina with stability and posture. I really think this has helped her feel more confident in her walking. And she really wants to walk...maybe because we have promised any toy she wants, but the point is she wants it. This morning the first words I heard were, "Mom, I want to walk, can we practice?" Sure thing girl! So we got her "gear" on and look at her! We started small, and we kept increasing the distance.
I have a walking helper and she walks all the time with it, but she has the security of me catching her if she falls. This is all her though! And this is what walking is all about!
It amazes me that it has only been 3 months since her rhizotomy!

Of course we were watching Signing Time!