Cerebral Palsy, Rhizotomy, and Gait Lab Study

A Gait Lab Study is done to determine the way someone walks (their gait). People with cerebral palsy have difficulty walking, and looking closely at how they walk provides information about how their body works, and what muscle groups are affected, shortened, etc.

My daughter, Nina, has spastic diplegia. Before her rhizotomy (SDR: selective dorzal rhizotomy) her cerebral palsy was quite involved. They chart kids in a 1-4 scale. One being mild, and four being most involved. My daughter was at a four before this surgery.

Before her rhizotomy, Nina had a gait lab analysis. This last Monday, she had another gait lab done to determine her progress two years following her surgery, and determine the next steps.

The progress she has made in two years is pretty amazing! Here is a before and after video.

These Girls Got Wheels!

One of the great and exciting rites of childhood is learning how to ride a bike.

I lived in a fenced-in neighborhood in Mexico City. Although we did not have freedom to wander anywhere we wanted, the neighborhood kids and I owned the safe streets of our small community. We had hills, empty lots where we built forts, and trees to climb. Oh the many days spent on my bike riding with my friends, the wind on my face, sun on my back, and the promise of fresh lemonade waiting for us when we needed a break.

The thing is, riding a bike is not the same for kids with special needs.

Last summer, Nina got to borrow an adaptive bike from the school so that we could work with her at home. Nina had an IEP last Tuesday, and Andy asked if we could borrow it again this summer. For many kids with cerebral palsy, things like riding a bike can be challenging because of coordination and strength.

But then Friday came along, and Nina decided, forget the adaptive bike, I want to feel that wind on my face the same way all typical kids do, I am not missing out on that!

So she got on the little bike with training wheels...and she took off!

This girl is ready to prove that she is full of potential. Amazing how chasing her as she rides her bike reminds me of where she would be at if we had not adopted her. Yet here she is, feeling the wind on her face, flying down the street on her bike!

And you know what? I think someday those training wheels will come off.

Now here is the deal, Ellie (my oldest) witnessed Nina riding her bike and thought, I am older than my sister, maybe it is about time I lose the training wheels.

So on Saturday she asked Andy to take the training wheels off and asked, "Do you think I can learn how to ride my bike today?" And he said, "Well, maybe it will take a little while, but we can start working on it." But she said, "No, I want to learn to-day!"

She has heard us say plenty of times, "You can do anything you set your mind to" and she believes it. She wanted to loose the training wheels on Saturday and learn how to ride her bike...so that is exactly what she did!

Today, both Andy and I have gone around the block with her a few times, and she already tried to ride "as fast as I can" which almost resulted in a wipe-out. Thankfully, she saved her balance and kept going.

I call this one memorable weekend!

Now to get the rascal to show an interest in riding a bike!

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!

When blogging blew me away

I began to blog because I am a writer, and writers write. But I also blogged because I wanted to connect with other parents that walked the same journey I walk.

Through this blog, I began to share about life with a baby with Down syndrome. After a while, I began to receive emails from other women who were struggling with a new or a prenatal diagnosis of Down syndrome. Somehow, it seemed, my words touched their heart and they needed someone to talk to. I prayed for each one of these women, and soon I recognized I was part of a greater story where I only had a small part to play. But however small, I considered it to be an honor and a “high calling” so I continued to write.

When our “special needs” family expanded by adopting a child with cerebral palsy, I began to write about adoption. Mainly, I was writing about the emotions of adoption, because I wanted to be honest and real about the process. Adoption was hard. I wish someone had reached out to me and affirmed that my emotions were normal.

I write because I want to offer hope, courage, and community to those reading my words.

I write because I don’t want the hurting, struggling, or broken to think that they are alone in this journey of life.

And I write honestly, because if I only tell you what makes me sound good, perfect, or like a worthy pastor’s wife, then I have cheated you in some way. If I tell you that adoption is hard, but I don’t tell you that it took me more than a year to feel any love for my child, I have alienated you if you too are an adopting parent struggling with love. If I tell you that I struggle with anxiety, but I don’t tell you that almost a year ago I had to ask for help, then I have made you feel lonely in your own struggles thinking nobody will understand or that you are “worse off” than the rest. If I tell you that being a parent is a joy, but I don’t tell you that at times I feel like a failure as a mother because of my media addiction, then I am not allowing a level of accountability or honesty to enter into my life, and maybe yours too.

Last week, I wrote about special needs parents feeling invisible. I wanted to affirm them that they are not alone, and that I see them. You can read that post HERE.

Wow.

That is where blogging blew me away.

In a week, that post has been shared more than 10,000 times on Facebook through my blog and through Not Alone.

And I want to say thank you! Thank you to all of you who shared that post.

Mainly, I am simply humbled that my words were able to encourage so many special needs parents. Because I do, I see you!

The typical sibling AKA the "normal" sister

April 10th is National Sibling day. In other words, a day set apart to celebrate siblings of kids (or adults) with special needs.

If you have been around here, you know I have 3 girls. My oldest daughter is my "normal" child. I use this term because I think this is what most people outside the special needs community use, but here is a little "educational moment" it is really more appropriate to use the term "typical." You know that little saying, "Normal is a setting on a washing machine" yeah, that applies for special needs too.

Because of the nature of this blog (and my writing) I really don't talk much about my oldest. And the thing is, she is pretty phenomenal.

Because of her sisters, she is one of the most accepting and understanding kids I know. I love her heart of compassion, and how well she "gets it" when it comes to other kids (not her sisters) having special needs.

I am proud of her. Okay, that might even be an understatement. But she really makes me proud, and in so many ways I look up to her.

So today, in honor of sibling week, I am sharing with you her newest passion: playing the piano. Ellie has been taking piano lessons for over a year. All of a sudden it just clicked and she plays every single day on her own, because it is fun. She works on her songs for her lessons, and then she learns her own songs, by ear.

Oh this girl is so talented! but she is also very shy! We have asked her several times if she would like to sing (she has a great voice too) but she does not want that type of attention. She might consider playing the piano, she said maybe for Mother's day. I think that would be really sweet.

So here it is, her first recital (and you all get to be the attendees).

From her piano lesson.

From her love for music, she figured it out by ear.

EDITED TO ADD: this post was inspired by my friend Shasta, who thought about making sibling's day sibling's week. CLICK HERE to visit her blog and the other blogs linked up. If you write a post about your typical kids, join us!

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!

Recovery after surgery...

For the last 5 years of her life, Nichole is on a mission to surprise us and challenge any expectations even we - her parents - have of her. This surgery was no different.

First of all, the plan was for Nichole to get ear tubes, at least for one of her ears as there was fluid there. However, when they went in, her ears had no fluid, although the doctor did mention one of her ear drums looked peculiar. Not sure what that means, but I am sure we will talk about it later. In 3 weeks we go back for a check-up and a hearing test.

Recovery was hard. How do you help with pain when your child refuses to take oral medication? I think the chemistry of Tylenol did not feel good going down her throat. She spit most of it out, refused to take it, so I think she was not getting enough relief from her pain. We could get her to drink a little bit, and eat a little bit, but it was hard.

And this is where I discovered that I don't handle my kids in pain well at all. It was hard with Nina, but with Nichole, my feeling of helplessness was even greater. While Nichole cried refusing to take her meds, I was crying too,begging her to take them, yelling in desperation "Nichole, please, take you medicine sweetheart, you have to take it!", and of course making the sisters cry too.

So I got suppositories.

Oh how I love suppositories! Nichole did not mind them that much either. No more crying to get meds, it was so easy and fast she really didn't have a chance to fight it. I tried to avoid it, I mean, who wants to use suppositories? But after that she began perking up and this girl likes to eat noodles and eggs, and drink her juice! So that is what she had for about a week.

Same day we started the suppositories, she started asking for chicken and french fries. Yes, my kid is a McDonald's junkie, and for some reason this was exactly what she wanted to eat. She kept bringing me her coat and shoes and asking to go get them. She is not a fan of a soft diet, and the poor girl has sensory processing issues, so textures are a big thing. That is why we only ate noodles and eggs. Those are okay.

We considered sending her to school today, but she wanted to stay. Next week we are back to normal. praise God!

Oh, and since she is all better now, guess what treat I got her. Asi es! A Happy Meal!