Down Syndrome and Therapy {a guest post by an OT}

Children with Down syndrome often receive occupational therapy to address motor delays. Today I’d like to share some physical characteristics of Down syndrome that may affect your child’s motor development and then I’ll share some easy activities you can do with your child with Down syndrome to promote development of motor skills.

Physical characteristics of Down syndrome that can affect motor development:

• Hypotonia. This is a fancy medical term for low muscle tone. Babies with Down syndrome often feel very floppy when you hold them. This is due to the low muscle tone. The best way to imagine what it is like to have low muscle tone is to think of when you are exhausted and how much energy it takes to get your muscles to move. That is what it’s like all the time to have low muscle tone. It is good to remember that low muscle tone affects every muscle from head to toe.
• A single transverse palmar crease (also known as the simian crease). Despite some beliefs that this is a primary physical characteristic of Down syndrome, only about half of children with Down syndrome have the single palmar crease. This may affect your child’s hand dexterity, but often the single palmar crease does not have a significant impact on hand skills.
• Short fingers, especially 5th finger(pinky finger), which may appear slightly bent. Smaller fingers and hands may cause your child to have difficulty with tasks that require fine motor precision and dexterity, such as buttoning pants.

Activities for babies:

• Tummy time. All babies need tummy time, but this will be especially important for your baby with Down syndrome. Lots of tummy time will help increase your babies strength and help your baby overcome the low muscle tone associated with Down syndrome.
• To develop fine motor skills, encourage your baby to grasp onto toys such as rattle and rings. Since your baby may have smaller hands, make sure the toy is thin enough for your baby to get his or her hand around it.

Activities for toddlers:

• Drink through a straw. Since low muscle tone affects every muscle from head to toe, drinking through a straw will help strengthen the muscles of your child’s mouth and face.
• Further develop your child’s fine motor skills with simple, age-appropriate toys, such as duplo blocks, playdough, and wooden knob puzzles.
• Walk, walk, walk! Toddlers with Down syndrome typically learn to walk around two years of age. The best way to promote their gross motor development is to let them practice their new skill of walking.

Activities for preschoolers:

• This is a good age to start introducing oral motor games to further strengthen your child’s facial muscles. A simple oral motor game you can play with your child is to race cotton balls across the table by blowing through straws.
• Develop early self-help skills by encouraging your child to put her shoes on and teach her how to manage the Velcro on her shoes. This promotes independence and fine motor skills at the same time!
• Preschool is when children start developing pre-writing skills. Use broken crayon pieces to provide your child with small crayons for small hands. Encourage your child to imitate lines and circles. You and your child can also use your fingers to draw lines and circles in shaving cream, paint, or sand.
• As your child’s gross motor skills develop, you can introduce more challenging activities requiring balance. Encourage balance by standing on one foot to kick a ball. Or place a two by four piece of wood on the floor to create a low balance beam.
• To increase your preschooler’s overall strength, wheelbarrow walk with your child or have your child do animal walks (e.g. crab walk, bear walk).

Activities for school age children:

• This is the age in which children begin to develop more independence in self-help skills. For your child with Down syndrome this will probably take a lot of practice and patience! Skills that require fine motor dexterity, like zipping a jacket, buttoning pants and tying shoes will require lots of repetition. It’s best to work on one new self-help skill at a time.
• Developing scissor skills can require extra practice in children with Down syndrome due to their shorter fingers. Practice the open/close motion required for cutting by squeezing tongs and spray bottles. Promote the use of both hands together stringing beads or doing crafts that require tearing paper into small pieces.
• As your child moves from pre-writing to writing letters and numbers, keep in mind pencil grip. Children with Down syndrome have shorter fingers, which can make it challenging to hold a pencil appropriately. To promote the use of a tripod grasp, encourage your child to hold a small toy or eraser against his palm with his pinky and ring fingers, while he holds onto his pencil with the remaining three fingers. Click here to see what that looks like.
• As your child’s balance improves, keep introducing more challenging gross motor activities. Encourage your child to alternate feet when walking up the stairs or start riding a bike with training wheels. Get that two by four balance beam back out and practice jumping off of it!

The key to developing motor skills in children with Down syndrome is the same as in all children: go at your child’s pace and choose activities that are developmentally appropriate. I hope this list helps provide a guideline for promoting motor skills in your child with Down syndrome!


Recommended Reading:
Fine Motor Skills for Children With Down Syndrome by Maryanne Bruni
Gross Motor Skills in Children With Down Syndrome by Patricia Winders
Babies with Down Syndrome: A New Parents' Guide by Susan Skallerup


About the author:
Abby Brayton-Chung, MS, OTR/L is a pediatric occupational therapist with five years of experience evaluating and treating children ages birth to twenty-two, including children with Down syndrome. Her work experience includes school based practice, early intervention and feeding therapy. Abby recently moved from Southern California to New England, where she is enjoying the changing seasons. Abby currently specializes in providing occupational therapy services to students with language and learning disabilities. Abby blogs about her experiences as a pediatric occupational therapist at www.abbypediatricot.blogspot.com.


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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!

What 3,000 highschool students taught me about the gift of giving (A guest post)

The moment when I was at the center of 3,000 people standing to say they wanted to help my family taught me a lot.

It taught me that I need to get over my inhibitions about fundraising for Malachi, because it's not about me, it's about him.

It taught me that almost nobody will help if you don't ask, but EVERYONE will help if you do ask.

It taught me the strength in numbers and the immense and universal power of compassion.

It taught me that it is really not about the money. None of those people had to donate a penny to make me feel their charity of spirit and none of them was pledging to buy more than a $1 raffle ticket. It didn't matter. Just knowing that people cared enough about our struggle to stand with us overwhelmed my sense of relief and gratitude.

It taught me the truth behind the statement I saw on a church billboard recently: "For someone to feel the gift of giving, you must receive." What if I had turned my back on the Sparrow Club, and said: "Thanks, but no thanks. We're going to do this on our own"? That moment would have never existed. Those kids would have never felt the power of standing together like that. They never would have seen how profoundly their simple act affected me and how much good they can do for a real person just by donating a buck. They would never have felt how awesome it feels to give if I hadn't been willing to receive.

A fabulous blog called Momestery also made this point recently, saying about its recent fundraiser that it really wasn't about the recipients.

"It’s for all of us to learn how powerful we each are, how much we have to offer even with the little we have. We are all in bits and pieces and when we offer our bits and pieces -MASTERPIECES are created!!!!"

It's really true. It feels good to give. It feels good to lend your arm in someone else's push up the hill. In fact, in the last month, I myself have given modest amounts to several campaigns, which is something I really haven't done in the last couple years. Especially since I found out we were having twins, I've been extremely cautious about money and certainly didn't feel like I had enough extra to give away. But those kids taught me that the act of giving BY ITS VERY NATURE means that you have enough. You simply cannot get that feeling from hoarding, or consuming, or even acquiring more money.

How many times have you heard someone richer than you complaining that they don't have enough? They're not lying — they really feel that way. That right there should make it obvious that it's not about reaching the next payday or the next tier of socioeconomic status.

It's not about what you have. It's about what you are willingly give away.


Will you stand with those kids? Do you want to discover how great it feels to be part of our little "masterpiece"? Join our Kickstarter campaign! Or join some other cause! Seriously! I don't care who you give to, just give and revel in the feeling!
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Shasta Kearns Moore is the author of OutrageousFortune.net and a beautiful board book called Dark & Light: A love story for babies. Please consider buying a copy for the babies in your life through her Kickstarter campaign that runs until June 27. One-hundred percent of the profits from the campaign will go to her son's medical needs.

Personal Note: I met Shasta through our connection with Cerebral Palsy. She is a great gal and besides sharing a diagnosis for our kids, we also share a love for writing. In this blog you have seen me advocate for orphans and share about fundraisers. I know Shasta's journey with her son and I know well how expensive therapy can be and how difficult it is to deal with insurance. Sometimes, it is not only kids from far away that need help, sometimes it is our very neighbors who are trying to do the best they can to help their children reach their full potential regardless of their disability. 

My Husband Likes Crafts Too

Yes, Andy enjoys doing crafts. Except his crafts consist of using saws and drills. We have large fenced-in back yard. We love it and so do the girls. Last summer the fun outside consisted of a sprinkler and small pool. We figured the girls would like a swingset.

For Nina and Nichole, a swingset is not just swings and a slide, it is real physical therapy. They love it, they want to be on it, so they learn how to move their body, they learn balance, how to hold on to the swing, and how to climb.

And so Andy started crafting away!

 Ellie was a great helper. She was very proud of the part she played arranging the boards on the deck.

 Once the swings were up, we had excited little girls. Nichole did pretty well holding on.

 There is a bench where we can even have some snacks or play "restaurant."

Isn't it cute? Not only is it fun, it is a "tree house" and it even has little flower pots that the girls are excited to fill.

Next time the girls ask dad to do a craft, he will have no excuse, I mean, using water colors has to be easier than building a swingset....right?

Stretching Nina's Muscles: Fighting Cerebral Palsy

Imagine I ask you to tighten all the muscles in your legs, every single one of them. As tight as you can get those muscles to contract. Hold them that way for an entire minute! Now that you did it for a minute, why not 5 minutes? Let's try an hour, can you imagine doing that for 60 minutes? Now what about doing that for let's say...5 years? Even while you are sleeping?

This has been Nina's life, a constant tightening of her muscles, especially in her legs. Her muscles are so tight all the time that it is very very important that we stretch her muscles. Stretching goes against everything her body does most of the day. Stretching makes her muscles do something that goes against their natural way of being in Nina's body. Stretching hurts. But it is important. We need to get her muscles to stretch and elongate.

We stretch Nina at least once a day. Some days, getting that one time is a challenge in our busy days. On a  good day, we do this 3 times a day and we do our sets of stretches 2-3 times around.

You will see in the video that Nina is not liking it very much. We only did it once around. Our camera sound is terrible, but she began to cry at some point but stopped as we try to distract her. At times you will see she is pushing against my knee with her hand trying to get me away. She contracts even more and sometimes her fighting makes the stretch more difficult and more painful. You will also notice that I use all my strength to push on those muscles, it is a workout for my arms to stretch Nina for sure!

We are also adding some of the muscle exercises post-rhizotomy. We have her do "bridges" "alligators" and kicks. Her kicking is not a kick (as she cannot straighten her leg!)

And I will be excited to show a video post-rhizotomy to show you the difference in her muscle tightness.

Edited to add: For the sake of the video, we did all of Nina's stretches quickly. We hold the stretches for a while, (we sing ABC's or count in English and then Spanish all the way to 10 while saying it slowly) It is painful for Nina to stretch, so she usually cries during her stretches, and it takes us about 20 minutes per stretching session. Here, you get our "routine" in 3 minutes.

What Did He Say?

Today Nina and I had a full day at Mayo Clinic in preparation for her Selective Dorsal Rhizotomy. Her surgery is less than 3 weeks away. April 15th will be here before we know it!
To start the day, we met with the Physical and Occupational Therapists that will be working with her after her surgery and while we do intensive rehab work. They measured her range of motion and taped her walking with her braces and without them. Since they will be the ones to work with her after the surgery, it is important than they "feel" the before and after.

Next, we toured the rehab facility where Nina will be living for 3-5 weeks. She will have 3-4 hours of rehab work per day depending on how she is doing and how well she cooperates. This will be quite the time for our family, as we also have to pack up and get ready to move (more on a later post!)

We quickly met up with some friends at Mayo. Another little boy with power wheels!

After lunch, Nina got to take a pre-surgery class where she got to play with a doll and listen to the story of what will happen when she has her surgery. I think this was fantastic for Nina. I wish we had been informed of this option before she had her tonsils and adenoids out, and even before we did the last MRI.

During this class, Nina got to play with a stethoscope. She put it in her ears, and listened to her own heart. She was very quiet, and listened very intently. She listened, and she listened, and I could see in her face that a lot was taking place in her little mind. Eventually we had to ask her to stop so that we could continue with the role play and story.

"Did you listen to your heart Nina?" The teacher asked
"Yes, I did" Nina responded, "I could hear my heart... and I heard Jesus, I heard Jesus in my heart."

Both the teacher and I paused. Talk about a sweet sweet moment!

"Did he say something to you?" I asked
"Yes he did" Nina said
"And what did he say?"
"I love you Nina" She responded with a small whisper of her voice.

And I tried really hard to keep all the emotion in, because she is loved by Jesus, loved so deeply!"

"Well..." the teacher responded, "I think we just witnessed a religious moment right now"

I agreed it was a special moment, and I do wonder if Jesus does reveals some things to children, who have an open heart and ears to hear Him whisper "I love you."

After the class, we needed to pick up a script for Nina's prescription (medicine she needs to take for her rhizotomy). And wouldn't you know it, I saw a little boy with beautiful almond shaped eyes sitting on the floor. Of course I was immediately drawn to him, and his mom and I quickly began talking, because you know, the extra 21st chromosome brings us together. It is an extra family, and we have an instant, powerful bond that brings us together. Although Nichole was not there, I showed her off by pulling out her picture form my purse.

But that is not all! Little J was there along with one more friend! So I got to meet 2 beautiful little boys with Down syndrome and their mamas! And I liked them all right away! It doesn't take long to exchange e-mails and phone numbers when that extra chromosome shows up.

It also turns out, Nichole is not the only rascal out there. Now I am wondering if rascal activities are common in Down syndrome, for it cannot be coincidence that the nickname is the same!

Finally, after waiting for an hour for the prescription, we came back home.

Nina's Gait Analysis

Today, Nina had a Gait Analysis done at Mayo Clinic. Now, have I said before that I love Mayo? Well, in case you did not know this, I really do love Mayo! But on to the gait analysis...

If you have never seen one of these, it is a very sweet deal to watch! You know "Gallum"? Well Gallum was made by using the exact same technology that is used for the gait analysis. Now how is that for cool! 

What is a gait analysis? It is a test done to gather as mush data as possible pertaining the "gait" of an individual (or the way one walks). How does the individual look when they walk? What are their muscles doing when the person walks? What is the range of movement? These are basic questions that a gait analysis will answer by simple observation, and some really, really, and I mean really sweet technology!

We walked into a large gym. In the middle, there was a wide "path" marked by purple tape. At the end of the path there was a pretty regular looking video camera. However, all around the gym, up high, nestled in some black poles, were these red lighted cameras. No matter where you stand in the purple path, those cameras can see your body from every single angle that you have (yes, even those that you might not like! There is no hiding problem areas in this gym!)

Next, Nina got her tone and range of motion measured. It took a while to do this, but it was very important to have the measurements done.

Then came the fun part, Nina got 8 special type of microphones on her legs. Okay, I am not sure what they are really called, but that is what they told Nina they were, and they told her her muscles were going to talk to her using those microphones. You know those fancy medical machines you have to be strapped on to when you are in labor? the ones that show a straight line until a contraction comes and then they spike up all over the place? Well, every microphone in Nina's legs had a corresponding line. Every time she moved her leg, the line spiked and made noise. Her muscles were talking! And, the exciting part, is that they were all talking! But some of them, were very quiet.

Third came the fun part. Nina got her "space stickers" on.

See the "backpack" she is wearing? This is where she carried the "information box" that came from her microphones.

Unfortunately Nina was too curious about the silver balls, so they ended up taping them down to make sure they would stay.

Now Nina, do you think you can walk with all those fancy balls attached to you? I think the tech told me that she had over 50 of those on her!

First Nina got to walk without her braces on. This was the part where the space gear was necessary for. You can see how high up she is on her toes, her knees are constantly hitting each other, and her feet are turned in. Also, her left side is much stronger than her right side.

We also put the braces on, and kept on the microphones. You will notice that with her braces on she bends her knees a little more to compensate for the stretch, and even then her heels are up high. Knees? About the same!

This is a still picture, but, at the end of the test, we got to watch the video of her gait test. It is quite interesting to see your kid as a stick figure, especially a stick figure that moves just like them! If you click on the image it will enlarge it and you will notice her heels are way up high, and her knees bent, and her posture really will need to be worked on.

And why is this for? This is all in preparation for Nina's rhizotomy. Doctors need to have all this information on her body so that they can go in having a pretty good idea of where the problem areas are!

Botox Time!

Nina now has 4 round band-aids on her legs where she received her Botox injections. She seems pretty proud of them, just like any kid, and makes sure to point them out.

The entire experience was so smooth. The doctor was there with an intern and he went through the procedure again. This is what we know: Botox is just a temporary fix, and you take full advantage of loosened muscles to do stretches and break into the AFO's. He said in 3 to 6 months, the effects will start to wear off and we will have to do it all over again.

This time Nina got some shots on her calf muscles next time it will be her hips.

I had explained to Nina what was going to happen. I did not want her to be surprised by 4 injections to her legs. She was nervous, as I told her it would probably hurt a little bit, but that it would help her to walk.

As the doctor explained this to Nina again, she got sad and was about to cry. Then she looked up at him and with the sweetest little voice said... "But then Nina can dance?"

Talk about a sweet moment! A little girl who dreams of dancing with her sisters.

So the doctor says, "Yeah sure, maybe someday."

What? What kind of answer is that? How can he miss this?

"Did you hear what she said?" I asked. "This is a sweet moment and you cannot miss it." I continued. "This is a little girl who was an orphan not too long ago, who was neglected and now thrives in a family. Her world is full of potential and possibility and here she is sharing with you the dream she has to someday dance with her sisters. Isn't this sweet?"

I then looked back to the other doctor. "Isn't this sweet?"

We are all guilty of allowing special moments to become routine. So much so that we miss them. However, I was not going to let the moment pass without these two men realizing that this was much more than just a Botox injection. And they did, they both smiled and really thought about Nina's words, about the meaning behind the question and the dreams of this little girl who cannot even stand without help.

"Yes, it is really sweet." The doctor agreed, smiled, and somehow saw Nina for Nina, not just one more patient.

Nina cried a little bit, but once we were done she was happy!

So now we are stretching a lot more and hoping to feel the effects of the Botox soon!

On a different note, while Nina was telling Andy what happened, she said something like, "And they did not tie Nina down, mommy holds Nina, and then mommy carry Nina and kiss her, and no tying!" Makes you wonder all that took place, doesn't it?

Some might say that she is lucky to have us, that we are a blessing to her. However, we are lucky to have her. And I cannot wait for the day when our Nina stands in the middle of the room and dances, because on that day, we will be lucky to have her, and to witness a dream come true! What a day that will be!

Cerebral Palsy and Botox

Cerebral Palsy is still new to us. I feel like when Nichole was 5 months old I knew a lot about Down syndrome, but now that Nina has been with us for 5 months I still feel pretty lost in my knowledge of Cerebral Palsy.

Apart from adoption, the biggest hurdle for us has been her mobility issues. The first time we saw a physical therapist we were told they expected her to be doing worse since Nina had never seen a therapist before, while at the same time, our therapist had never worked with a child that was as hard and tight as Nina. Sometimes trying to stretch her is like trying to bend a block of wood by just pushing on it.

Even now, after 5 months, stretching her requires a lot of strength. There are times I cannot even flex her feet with my hands. I place her foot on my shoulder and lean into her so I can get her foot to flex.

Nina's Cerebral Palsy is called diplegia (the first picture in the diagram below.) And while her arms and hands are somewhat affected, she has full use of them and this rarely affect her movement. The times where her arms and hands are affected are when Nina is scared, nervous, or angry. During these "episodes" all her body is affected and as I have described it before, she turns into a wooden board and has no balance or control of her body. At these times she aquires a "curled" position. However, this seems to be more of a behavioral issue or a coping mechanism.

(If I am not using the correct terminology here, please correct me! As I said, I am just learning about CP.)

We have a great walker and we have great AFO's (leg braces.) The problem is that no matter how often we stretch, her legs and feet are still very tight and curled. Her AFO's work for a while, but after a period of time, her feet will shift and regardless of the many straps, the heels are up and we have to take the AFO's off in order to reposition her feet. Something that requires time as it takes a while to be able to stretch her feet to a 90 degree angle and we both can only do it so many times a day. As you can see, her heels are really "up there."

In light of this, we are going to try Botox. Botox has been used successfully in individuals with Cerebral Palsy when injected in the affected areas.

Cerebral palsy is a result of brain injury. What Botox does, is "numb" the nerves that signal the brain to contract. Because of the injury, the brain is not able to signal back telling the legs to relax. Once the nerves are "numb" there is no signaling to the brain. Does that makes sense? If it does not, then welcome to my understanding of this! I told you, I am just learning!

Needless to say, we are hoping that the Botox injections will help Nina. We have explained to her that it might hurt a little but it will help her heels touch the ground. "Like Ellie and Nichole?" she asked.

But Nina is a smart little girl, she asked one more thing, "Nina walk?"

We hope so, we hope that this will be a step forward towards achieving some independent mobility. We are well aware that walking independently might be a few years down the road, but we also know that she is capable of moving around with her walker, and eventually maybe just by using crutches.

Nina wants to walk like her sisters. Personally, I cannot wait to see all three of them dance together, all three girls with their unique abilities.

AFO's Make Me Cry!

When Nina first tried her AFO's on she loved them! She realized she had better balance and that it made walking maybe a little easier. The first time we put them on at home she was okay with it, but the second time around, as soon as she saw them, she started to cry!

As a matter of fact, she even cries when we stretch her now. It used to be that she would count with us as we would do a stretch, but now, she cries and cries and cries. Her legs are very tight, and this will be a process...a painful process.

So here are pictures of Nina standing as she has for the last few years of her life. You can see her that her heels are as high up as they can, and she stands on her toes (sometimes just the big toe!)

The AFO's make a huge difference, and you can imagine how much that hurts! Don't blame her poor girl. So for those of you that have a child with CP and had to go through this, any suggestions are welcome! I do think once she gets botox it will help, but for now, the poor thing is scared to wear them or be stretched, because it might mean, we will put the AFO's on!

But here she is, sitting like a "pretzel" which makes her feel so proud of herself! She was not able to do this when we first got her, as her legs did not "open up" it is pretty exciting!

Nina Gets her AFO's

Today we got Nina's AFO's (aka leg braces.) I had no idea what they were going to look like, if you remember, when I last posted about the AFO's, I had no idea which "kind" we were going to get. I really like these, as it allows for more movement of her leg and foot while keeping her heel "down."

Nina was still trying to walk on her toes, which is understandable as this is the only way she knows to do it! Both, the AFO guy (sorry, don;t know the official title!) and our physical therapist said it will take a little bit for Nina to get used to this.

She does like them though, even if she dislikes the feeling of them. When she first got down on the floor to stand, she was amazed at how her balanced had suddenly changed. Even though her heels do not yet come all the way down, she can no longer just stand on her toes, which means that she can balance better, she liked that! She even was trying to let go and stand on her own!

Walking also changed for her. She has to learn a new posture, as the one she has always had, does not work with your heels on the ground. It will be a process, but we are getting there and she will someday walk. How exciting for her! Once she gets botox, her braces will help her even more!

Our camera is out of batteries. I will later post pictures of Nina with and without her AFO's. You will see what a difference they make!

The Walking Continues

Today when our Physical Therapist brought out the gait trainer (walker) Nina was not very excited.

"No, no walker. No walker Nina"

"Let's try it, it will be fun!" I said

"No, no fun, no walker. No walking Nina."

But she had no choice. And so she was strapped in the walker. Jamie (our physical therapist) decided to go walk around the hospital and see how Nina did with long distances.

By the time we got back to the room and were done for the day, Nina said,

"No...no all done. More walking. More walking Nina!"

So she is hooked! She wants to walk! She absolutely loves it!

Casted for AFOs

Remember a few weeks ago when I wrote this post? I mentioned than Nina will be getting AFO's (ankle-foot orthosis). Well, today, she got casted and her AFO's are only a few weeks away!

First, they slid this thin sock on Nina's feet where the fiber glass would go over.

Then, the yellow plastic strip went over the "sock" and the fiber glass was wrapped around her leg and feet while we tried to get Nina's feet to be at a 90 degree angle with her leg. (The fiber glass looked like a large roll of tape!)
Here you can see that we are almost done with one leg.
When it was all done (it hardened up pretty quickly!) they cut through the material with the yellow plastic strip as a guide (that is what the yellow strip was for, pretty clever!)
And one leg is done. Nina looked confused as we said, "Here, want to hold your leg?"
And we worked on the second leg.
We might as well look at the camera and smile :)
And we are done! Two casted legs, and AFOs on the way! We were not able to look at options for patterns, but we said flowers or butterflies.
And, if you click on the post from last time, there is the picture of the different AFO's there are. I am not sure which kind we are getting. We talked about the pros and cons for the different styles (straps, no straps, etc) So I said whatever they think, I am new at this and trust them. So as soon as we get them (end of the month) I will surely post pictures.

A "Walk" in Progress

This is Nina just 2 days ago at Physical Therapy. The walker she will have looks just like this one except picture it in hot pink. Nina has a love/hate relationship with this walker.

Love, because she can really move in it. She can go faster than she was ever able to move before on her own, giving her an immense sense of accomplishment and joy. She is so proud of herself! And she can really go fast!

Hate, because this walker makes her posture be correct and she cannot compensate her movements. There is also this harness type thing that does not allow to scissor her legs when she walks. Basically, this walker makes her work hard!

So here are a few short videos of her as she is a "walk in progress."

Physical Therapy, Walkers, and AFO's

Today Nina got to go to Physical Therapy for the first time. Wow! Let me say it again, slowly...W.O.W!

My appreciation of Physical Therapy has taken on a new dimension after today. You see, when we began to take Nichole to physical Therapy (at 3 months old) I did not realize how much we were doing. Yes, I am the type of mother that will learn as much as I can, and do all that I can to help my children. I got the book "Gross Motor Skills in Children With Down Syndrome" and did many of the exercises suggested. I worked with Nichole and somehow "knew" what to do. The truth is, there is very little you have to do with an infant, so slowly, Nichole and I learned together.

Nina, however, is a different story. Yes, I have the book "Teaching Motor Skills to Children With Cerebral Palsy" and I have read it and looked at it many times. But when you have missed 3 1/2 years of learning along with your child it is not that easy! I try, but this time around, Nina and I really need help!

Our Therapist is just an awesome lady, and she is so good at what she does! She showed me some stretches to do with Nina and now I know she is not going to break! I was afraid of doing something that could...break her? Hurt her? I don't know, all I know is that I am learning and trying to figure out the body of a 3 1/2 year old with Cerebral Palsy.

She also said Nina will need AFO's (Ankle-Foot Orthosis) I was expecting to hear this because she really needs them! These AFO's will help Nina to keep her knees, legs, ankles, and feet aligned in in the proper posture. See, when Nina stands, she stands with her knees bent and on her toes. You can see from the picture that having these on will help her to stand correctly (or so we hope!)

And Nina will also get a walker that will look a lot like this one, except in hot pink! This way we can get her moving and on her feet! I knew that our future with Nina would require special equipment, and today, this became more of a reality. I am excited, so excited, yet, this is new territory for us, and I choose to see the fun of a hot pink walker! What is sweet is that if Nina progresses, this walker becomes a reverse walker.

So we have started. This is the beginning of a journey for Nina, a journey that she would have never been able to take had she stayed in Ukraine. It is exciting and it is intimidating, but thankfully, we have so many friends, family, and professionals that will help us and encourage us and Nina along the way.

Proudly, proudly we will wear the AFO's and ride the walker. And if someone stares, we will wave and smile because we have much to smile about!