Christy Brown's Left Foot

Tonight we watched a movie called "My Left Foot." It's the story of Christy Brown (who's a man), a famous author, poet, artist, who had cerebral palsy. It was adapted from his autobiography of the same name, and it was a good movie.

He was born in the 30s in Dublin, Ireland, and just like the doctors told us, they told his mom that he would be mentally retarded, a vegetable. But, he showed them he was smart, he could write, he could think, he could paint, and eventually he could talk. And he did it all with his left foot...except for the talking, he did that with his mouth!!

I think what moved me the most about the movie/story, was his mother's love for him. He had about a million brothers and sisters, but he was never treated any differently. Even the neighborhood kids included him in their games and things, wheeling him around in a wheelbarrow before he had a wheelchair. But nobody loved him like his mother. When no one else believed in him, she did. And when his dad was laid off and they had no coal to heat the house and were eating porridge for every meal, she didn't dip into her savings she was setting aside for Christy's wheelchair.

And Christy loved her back, even before he could talk or communicate in any way, you could tell they had a special relationship. She told him when he was young that even if she couldn't understand him, God could, and she took him to church. She loved that boy unconditionally. When he had more to give, he gave back to his mom, to thank her for all that she gave him for so many years.

I know that as a mother, I am put into a special role. There is a bond between me and my children that is indescribable, that you can only understand if you've had children. But there's something even more special because my child is disabled, something too deep for words. She is my beautiful baby, the one I worked so hard for, and she is perfect to me the way she is. I know that we're gonna come up against hardships; unkind words, staring, questions, but that's only because other people don't know my baby like I do. And when she's 2 and probably not walking yet, that's okay, because she'll probably be able to do some form of a crawl or a roll, and that will be more than she can do now. And that will be awesome. Already, we look at what she can do and think she's awesome.

I hope that someday, when it's time to write Sadie's story, that she will remember me (and Brian) as supportive, loving, and always encouraging to her. I hope that we can be the kind of parents who push her to always do her best and everything that she's capable of...just like anyone would expect of their children without handicaps. And I hope that she becomes an independent person, capable of loving and living life to its fullest.

If you want to enjoy a very sweet movie (or maybe you're ambitious enough to get the book, I know I'll be finding it at the library soon!), I highly recommend "My Left Foot."

ABM: a renewed hope

ABM is a new therapy we heard about from a lady at the Foundation for Blind Children (actually the mom of the little girl I wrote about yesterday). It stands for Anat Baniel Method (that is a picture of Anat Baniel to the left). I'm gonna post a bunch of videos, and I'm just warning you 1. they're long, and 2. you might need tissue (for happy tears of joy).

ABM is not just for special needs children, anybody can experience results through this kind of movement therapy. However, for our purposes we will focus on using it to help children...especially children with CP. ABM is based on the idea that simple pressure on the spine stimulates the nervous system allowing the brain to create new neural pathways. By increasing the child's awareness of his/her body, the idea is that the child becomes more mobile. It can also improve vision (if it's brain-related like Sadie's) and speech. Results from this approach to movement in children with delays/disabilities is dramatic and almost immediate.

ABM is learning-based, not medical-based, and because of what we know about the brain's plasticity and ability to recover and heal, the earlier one can start ABM, the better chance for full recovery of ability and normal development. This means that if we start Sadie now, she could very possibly be walking ON TIME. The reason I can say this with some confidence is that I've watched SO MANY of these videos and they are amazing.

But before you watch the videos, I want to share with you what Anat Baniel calls the 9 essentials that the brain requires in order to grow and develop new patterns and possibilities.

1. Movement with Attention: without movement we cannot feel alive, and movement with attention allows the brain to create new patterns so that a child can learn. Paying attention to your movements is powerful, even for adults. Think about if you've ever done yoga or Tai Chi, you are moving your body slowly and deliberately and it not only benfits you physically, but it's good for your brain.

2. Learning Switch: You want your learning switch to be on so that everything that you experience can be a learning experience for your brain to use and to help it grow. Turning on your learning switch allows you to become a real-life problem solver. In order to turn on this learning switch, it's important to step into each situation consciously expecting to learn something new.

3. Subtlety: Our job as we go through life is to become more and more refined and to be able to be more subtle with our movement and our skills. Creating more subtle pathways and connections in the brain allows us to be more complex with our skills. We want to help our brains grow subtlely and not with force so that we can get the most bang for our buck, so to speak.

4. Variation: Changing things just a little or finding new ways to do something causes the brain to flourish and spring to life. Make intentional mistakes when practicing, then go back and redo whatever it is correctly and you may find that your brain has really expanded and improved.

5. Slow: Slowing down helps us to feel and sense more of what's going on around us. This makes our lives richer. Doing everything on "auto-pilot" can cause us to forget that life is to be enjoyed, but slowing down and tuning into all our senses enriches our lives and allows us to really feel alive.

6. Enthusiasm: Enthusiasm is a skill, something you can learn to do intentionally, instead of it just being a reaction to an outside stimulus. Anything you bring enthusiasm to will grow and expand and improve. When you are enthusiastic about something someone has done, you may find that they will do it more. When you are internally enthusiastic you effect the environment around you, creating more energy and a more positive environment to be in. Make the small into great by being enthusiastic.

7. Flexible Goals: When you are flexible about your goals, you are able to be flexible about the opportunities you have to reach those goals. Being rigid about your goal and how to reach it actually lessens your chances of ever achieving it. The moment we make a new goal, we don't know how we're going to get there or if we ever will, we aren't even sure what it will look like when/if we do reach our goal. Heading roughly toward something at first, then narrowing your focus toward your goal the closer you get to it will help you be more successful.

8. Imagination and Dreams: Imagination is just as good as the real thing. Using your brain to imagine yourself doing something actually creates new patterns rather than just doing the same thing over and over and traveling along the same lines that were already there. Dreams are big ideas we form from within about our future or the future of our children. Dreams give us a direction for our lives.

9. Awareness: For humans to grow and thrive it's important for us to be aware and to continually be challenging ourselves to do things at higher and higher levels. Becoming more and more aware of ourselves and our environment is something we can develop regardless of our age or stature. Without awareness there can be no knowledge. Becoming aware makes one accurate, deliberate, and wise about other people and about oneself.

Now, check these out

Anat Baniel's video showing several children with CP (it's in 2 parts)
Part 1
Part 2

Isaac, who had meningitis as a baby and it caused hydrocephalus (water in the brain)
Isaac's video

Here's a 6 month old with some paralysis of the left side of her body
Hannah's video

This is Michelle, she is here in Phoenix (so cool that she has amazing videos on here!)
Anthony's video

Rolling over with Liam
Liam's video

This one might make you cry, I've watched it 3 times and cried everytime!
Cole's video

This is Aliyah, the little girl I told you about yesterday who fell in love with Brian
Aliyah's video

If you actually took the time and watched ALL these videos, you might also be convinced. Needless to say, I'm calling Monday.

Learning to Eat

I think the hardest thing about teaching Sadie how to eat is that all the books are written for normal babies; babies who reach and grab and put things in their mouths (although Sadie is getting better at using her hands). So, everything I read I have to take with a grain of salt. I would love to do the baby-led weaning method that La Leche League boasts as the best way to teach a baby to eat. This method includes giving baby finger foods from your regular meals, no purees, no special baby foods. Sounds easy. Sounds fun. Sounds unrealistic.

For now, we'll do it the traditional way. Well, sort of.


Sadie had her first solid food, butternut squash, on August first. She was 6.5 months old, we had gotten clearance from the pediatrician, and we already had some pureed squash in the freezer. So we went for it. And it didn't go badly...until we were trying to coax it out the other end. It took 4 days!! But I was excited, so we tried bananas, this time it took 5 days!! At that point I decided we needed to wait another month, let her digestive system mature a little more.


On Labor Day we had bananas again, and we've been going strong ever since. Sadie's even eaten 2 meals in one day. And it is coming out the other end just fine. Good decision, mama.

But I still wish there was a book for teaching your special baby to eat. The problem is, it's such a wide audience. Even if we narrowed it down to teaching your CP baby to eat, it'd be too hard. So many forms of CP effect the facial muscles and actually impair eating and speaking. It's actually a HUUUUUGE milestone that Sadie is doing so well with it. This means she likely will be able to speak and not have future eating problems. So, for now we just read all the normal baby food books and websites and we adapt it to fit our needs.


And I guess that's what all parents do whether they have a special needs child or not.

hips and Bones

We saw the hip doctor on Wednesday...I know, I know, it's Saturday and I'm just now getting to telling you about this!! You see, there's this show on TV called Bones, and since we don't have TV, I get sucked into shows with multiple seasons on netflix instant streaming. I've watched 4 seasons of Bones and I can't stop. Usually I am okay with just moving on to another show even though there are more seasons I can't get right now, but this one is different somehow. There's an underlying love story between 2 friends who are partners in fighting crime, there is the beautiful slutty girl who experiments with bisexuality and whom everyone seems to fall in love with despite the fact that she's pretty slutty, and then there's the fact that the show is filled with nerdy scientists who solve murders!! Yeah, pretty great huh? It's like Law and Order meets Big Bang Theory...or something. Anyway, I found pirated episodes online and I am plowing through them with reckless abandonment, I'm addicted. ANd because that's ALL I do when I'm sitting here holding Sadie nurse-napping, I've neglected to write on my blog.

Please accept my apologies.

Okay, now that I've gotten that off my chest...we saw the hip doctor this week. In case you don't remember there were x-rays taken of Sadie's hip while we were staying at the hospital for Sadie's long-term EEG. There was some concern as kids with CP and high muscle tone (tightness in the muscles), tend to have problems with hip development due to straightening and pulling in of the legs. Sadie was also given a new medicine during this hospital visit to help relax her muscle tone and give her more control over herself. This new medicine has actually done wonders for Sadie and we really see a difference. But her left hip is somewhat of a concern.

We revisited the doctor who requested the x-rays and he mentioned that he'd like to inject Sadie's inner hip tendon with a medicine called phenol. (the link I gave you is wikipedia, the ENTIRE thing is about the chemical makeup of phenol, but at the bottom under "niche uses" it mentions the use for paralyzing nerves...scary) This would disrupt communication between that tendon and her nervous system and cause her leg to relax and hopefully allow that hip to move and develop correctly. This could last 4-6 months. (if you want to learn more about phenol, google "phenol used for cerebral palsy" and it'll give you more information)

I looked phenol up on the internet and found out that it's very common to use in people with CP, but it's pretty scary. It can cause side effects that an adult might be able to handle (like tingling and a cold sensation at the point of the injection), but to me sound like a recipe for a screaming baby. There is also the possibility that it could kill the tendon completely and we're not sure we're ready for that, she's still so young, and she might need that tendon for walking! We agreed to think about it and to see an orthopedic surgeon to see what he thinks. That's who we saw on Wednesday. His name is Dr. Karlen and he was very nice.

Dr. Karlen told me that, while Sadie's hip is somewhat of a concern, it's not something to get really worried about yet. We just need to keep an eye on it. Which means no drastic measures...like phenol. Yet. Dr. Karlen let me take pictures of the x-rays with my phone so I could share them with you, so I have attached them below so you can see for yourself. He says her sockets and bones themselves look good, we just want to make sure the ball of the socket digs real well into itself so that she doesn't experience popping out of joints or wearing out of cartilage. He would like to see her every 6 months or so and do more x-rays to keep an eye on it. He seemed fairly positive that we probably wouldn't need treatment for years.

This is great news.

And now I have 4 more episodes of Bones before I am done with season 5. Sick huh, maybe I need to see a "Bones" doctor myself.

You'll notice that the left hip (marked with a big red L) is slightly higher and sits a little less imbedded into the socket. Compare with the right hip, which looks okay.
This x-ray was taken with her legs froggied outward, you can see how the right hip is at a good angle for the ball to form its socket. However, the left is lacking in range of motion and is at a slightly different angle. We're working on that.


PS. I raised $375 in my first day of fundraising!! ...but I haven't raised any since. I'm still looking for donations and no amount is too small. Please consider giving to the Phoenix Children's Hospital, the very place Sadie's life was saved. Click the link below to read more about it.

What is Cerebral Palsy?

Since we've been diagnosed (officially) with Cerebral Palsy (CP), a lot of people have asked me what that means exactly. So, I thought (since I'm a teacher at heart) that I'd give a little seminar-post about CP to hopefully answer some of the bigger, more common questions.

CP is a condition that effects the brain and nervous system and can cause many different symptoms ranging from extremely mild to extremely severe. There are different kinds of CP: spastic, dyskinetic, ataxic, hypotonic, and mixed. We believe Sadie is spastic. This means that her muscles are very tight (although this isn't a constant thing with her, she is loose when at rest), her joints do not open up all the way (mainly her hips), and she tends to tuck her arms in, point her toes, and squeeze her legs together. However, she also shows signs of other types of CP, for example she tends to have abnormal movements and tremors, particularly during times of stress.

The majority of children with CP are born with it (even though it may not be detected until months later), but the good news is that it never gets worse. CP doesn't always cause severe disabilities, I'm sure most of you have seen a severe case of a person who is in a wheelchair, can't communicate or manage their bowels, and may not be able to eat, however, we believe (based on what we already see) that Sadie will never be this severe. And with lots of prayer and therapy, we also believe that Sadie will grow up to live a near normal adult life. Studies show that the sooner CP is detected and treated, the better chance the child has of overcoming and adapting to disabilities. Unfortunately there is no cure for CP, only treatment.

Many individuals with CP have normal or above average intelligence (our little genius), but may have trouble expressing their intelligence because of lack of muscle coordination in the face or other parts of the body. It is common for children with CP to make great strides in ability through therapies. We have already seen Sadie come a long ways. She can breastfeed, her seizures have subsided, she has even eaten solid foods somewhat successfully. She can roll over (although she doesn't do it often), bat at her toys, and almost sit unassisted. To you these may not be a big deal because your infant does them early and automatically, but to us these are HUGE gains.

What caused this to happen to Sadie? Well, there are a couple of different theories, but nothing is really known for sure. First we thought she aspirated the meconium and suffered damage due to lack of oxygen (Hypoxic Ischemic Encephalopathy, or HIE). Then it was discovered that Sadie's placenta and umbilical cord was infected with Group B Strep, so we conjectured that she was sick before she was born, which caused her to pass the meconium and aspirate it. But then we were told she never really aspirated the meconium, and even though the infection was in there with her, she was never infected. Now the thought is that the toxins from the infection actually crossed the blood-brain barrier and caused some damage. They think there was also some HIE, because she has shown improvement since her brain cooling, but the brain cooling wouldn't have helped the damage from the Group B Strep, so that is why she's not doing as well as most HIE/brain-cooled kids. And that is the conclusion we have come to for now.

Sadie's visual impairment is also related to her CP. Many people with CP have what's called strabissmus, or a lazy eye. Sadie does have this, but she also has Cortical Visual Impairment (CVI), which is lack of development in the occipital lobe of her brain, where her vision is interpreted. As with CP, this will not get worse. In fact, we've been told her vision will continue to improve, making the most gains before she is 2 years old. As her brain is stimulated through therapies, treatments, and exercises, her brain will grow, and hopefully so will her vision.

All of this to say we don't know what Sadie will be able to do and not do. Being so young and not really having a lot expected of her yet makes it hard to tell. She seems to be doing extremely well, but we tend to see the situation with rose-colored glasses...and having no previous experience with a child with CP, I'm not sure our judgment is accurate. Yes, she's delayed, but there is A LOT she seems to be able to do, and she doesn't seem that far behind (yet). We just keep working at it, doing our best with her, giving her the best care and therapy and treatment, and we hope that it all helps.

If you want to read some more about CP, here are some good websites to check out.
emedicine health
kidshealth
United Cerebral Palsy
National Institute of Neurological Disorders
Google Health