Question of Bones

Big points to my cousin in Florida for asking a great question about muscles vs. bones.

If you have no idea what we are even talking about, read this post first. It will fill you in on Chloe’s upcoming surgery.

My cousin’s question is: “Is shortening the bone easier than ‘stretching’ the muscles and tendons?”

I nearly addressed this in my original surgery post, but it was getting so long I decided not to. But it brings up a couple of really good points that are key to why this surgery is the better fit for Chloe.

First, the short answer is that NO, shortening the bone is NOT easier than manipulating tendons and muscles. Both the skill and difficulty of the surgery itself and of the recovery time and process would be way simpler and easier if it were only involving muscles and tendons.

Lengthening or releasing muscles and tendons is a great and helpful procedure for many patients. However, there are 2 main reasons that this femur extension surgery is a better fit for Chloe at this time.

First, the doctor is wanting to fix a greater degree of angle than a tendon/muscle procedure would fix. In fact, the doctor’s goal for Chloe’s surgery is to fix 45-50 degrees of her contracture! That’s a significant change. And it’s not a change that a tendon/muscle release would accomplish. If I remember correctly, a tendon/muscle release fixes closer to 10-15 degrees. Chloe’s contracture is significantly worse than that.

The other big reason this femur surgery is a better fit for Chloe is that the end goal is increased function. If the only goal were straightening, then a different surgery might be an easier option. But since the end goal is more functionality in walking and standing for Chloe, then it is important to keep the muscles and tendons more intact. Simply put, if we go to snipping those muscles, then she loses the functionality of controlling them for walking and getting around.

I did mention though that the doctor does plan to slightly release her tendon at the hips. He is going to do it quite conservatively so as not to lose that function. This tendon portion will be an easy surgery to go back and do again if we decide he needs to release it some more later. But for now, erring on the conservative side is the best choice for her. Time will tell if she would benefit from any releasing later on.

So again, thanks for the great question. And don’t hesitate to ask some more.

(*disclaimer: I am obviously not a doctor… These posts are my way of updating friends and family on Chloe’s upcoming surgery, not to be the final word on medical procedures or judgements.  These posts are purposely written in a very simplified and general way so as not to run everyone off with crazy vocabulary and medical talk. And guess what? I might mis-speak the logistics now and then so don’t be citing the journals on me…. I’m communicating the general idea, and it’s okay.  Thanks. :))

Operation: Straighten Those Legs

IMG_6822It is time to update our friends and family on a big, upcoming surgery for Chloe.

But, first…

The background:

For the past few years, Chloe has been losing the ability to walk and even to straighten her legs. Her muscles have continued to tighten and shorten to the point that now her knees are half-bent at their straightest and she is bent forward at quite an angle at her hips, too. To imitate how difficult standing and walking have become for her, put your self in a wall squat position and attempt to walk around the room while holding that position. It is quite laborious! Because of the pain and difficulty this position causes, Chloe usually chooses to move around in her wheelchair or by crawling on the floor. While these 2 modes of mobility are totally fine, she wants to stay on her feet.

There is no clear explanation for this decline in mobility. Doctors’ best explanations are quick growth and results of puberty. Puberty tends to wreak havoc on the bodies of kids with neurological issues.

For a couple of years, doctors have mentioned different procedures and surgeries that might possibly help straighten her back up. But there has never been much clear guidance for them about which one might be most successful. Remember that Chloe remains quite a mystery since she is still undiagnosed. The best doctors can do is speculate what might work since they don’t have a comparison of others with her diagnosis.

Recently, Chloe had the opportunity to be the subject of a highly specialized gait analysis. The details of getting her into that clinic and the story of her amazing performance there is the subject of a later blog post. (Someone remind me to tell the story soon if I forget!) But the results of that gait analysis led doctors to pinpoint which procedure is the most likely to help her. Doctors determined there was one surgery that might be able to keep her on her feet by straightening her legs.

The surgery:

The name of the surgery is Distal Femural Extension Osteotomy. Basically, the surgery consists of cutting a wedge out of each femur just above the knee (yes, cutting through the bones and removing a chunk out of each) and repositioning the bone at an angle, thus, “over correcting” it and making the leg straighter. The bones will be held back together with plates and screws, “deforming” the femur bone in order to have a straighter leg. It’s quite an extensive surgery to consider. The surgery is a way of bypassing the knee in order to straighten the leg. You can watch a video here. (Don’t worry — there’s no blood or anything. It’s actually a training video with a model.)

The doctor will also slightly release the tendons in her hip flexors at the same time, but that is a very minor portion of the surgery. Releasing her hip flexors will slightly straighten her body at the waist. Hopefully the muscles will continue to stretch to bring her more upright.

The doctors are opting to leave the integrity of all of the leg muscles as is; and the hope and expectation is that those muscles will all stretch with the new angle and will remain able to function fully.

The recovery:

At the time of the surgery, Chloe will be hospitalized for 3-4 nights. Then she will go home to rest and recover for 4 weeks. She can’t put any weight on her legs for those 4 weeks.

Then a month after surgery, she will be admitted back into the hospital for 4 weeks for intensive rehab therapy which will continue to strengthen and lengthen the muscles in her legs and teach her how to use her legs with their new angle. A month in the hospital is a long time, but what a great opportunity for Chloe to make progress!

The decision:

Perhaps in another blog post, I’ll tell you some of the things that seemed to us to be significant ways that God has been orchestrating this whole thing for a while. Too many coincidences to be coincidences…, you know?

We sought counsel and second opinions for several months while praying that God would guide our decision.

Doctors agreed in the end that this major surgery is the only way to keep Chloe on her feet. While the process will be painful and time-consuming (ALL-consuming!), it is really the only option available to us at this point.

Chloe has known about the possibility of this surgery from the day we learned about it. We felt that it was important for her to be a big part of the decision. She has wanted to do the surgery all along. She wants to stand, to walk, to cheer, and to dance. As the time draws near and conversations become more real, her anxieties are definitely increasing. (As are ours!) But she still says she wants to do it. The other day while we were talking about it, she typed that, yes, she still wants to do the surgery because “legs helps her to stand up.” She is the most persistent, hardest-working person I know so if anyone can do this thing well, it’s her! She’s ready to go.

The plan:

We have a small window of time in which to do this surgery. It’s now or never. It’s a one-time-chance kind of deal. There’s no guarantee of success. But it is the only and best option available. And we are grateful for the opportunity.

Surgery is scheduled for May 9 (less than 2 weeks from now!) and will happen here in Fort Worth. Chloe will stay in the hospital for most of that week with careful pain management and recovery time. Then we will go home for rest, rest, recovery, and more rest. Four weeks of lying around.

Then, she will go back into the hospital around June 6 and will most likely be in the hospital through July 4. That month will be spent doing intensive therapy several times a day and determining what braces and supports her new legs might need. This surgery is literally redesigning the motor dynamics of her body so we don’t know what all that will entail.

The only guarantee at this point is that her legs will be straighter at the end of this process. We are also hoping and praying for increased function in walking and standing. We are hoping it is much easier for her to walk. And we hope she is able to dance and to cheer on her feet to her heart’s desire.

And the usual:

Feel free to ask questions. Chloe is privileged to have so many people who love her and care about her success. The better you understand the surgery and recovery, the more specifically you can pray for her. And we definitely appreciate all your prayers!

Stay tuned….

The Detective

Out of sorts.magnifying glass

Emotional.

Just not right.

Overly dramatic.

Controlling/ bossy.

Out of her groove.

Not herself.

In a mood.

Goofy. <smh>

These are all phrases that I and/or Chloe’s therapist and/or Chloe’s Mimi said about her during her therapy session yesterday afternoon. None of us were frustrated with her. None of us were angry or short-tempered.

But we missed it.

All 3 of us love her and know her well. All 3 of us knew something was up. Was she tired? Not feeling well? Just out of routine since this was the first time to therapy in nearly a month?

We knew it was something. And we all gave her time and we listened. We all comforted and validated.

But we missed it.

Later that night I realized that it was her tummy. Her tummy wasn’t feeling right. She asked for food and more food and more food — much like an infant with tummy trouble. You know… the baby’s tummy feels awful, and he assumes it is because he is starving. Or at least he thinks more milk will help soothe his belly ache. Well, that’s what Chloe was doing so I knew it was her belly.

I got her ready for bed and put her to bed so she could sleep it off.

Then I got a text from her aide at school that she was going to stay home the next day. She was sick with a nasty stomach virus. Her tummy was cramping, she felt miserable, and it hurt to move.

Interesting. I immediately knew that Chloe had the same virus. She was feeling the same way. She didn’t have an attitude at therapy; it just hurt to move. She wasn’t averse to putting her feet on the ground to walk as much as she just wanted to keep her knees tucked up into her tummy where it felt a little more bearable. She didn’t lay back and close her eyes right in the middle of therapy to show that she was in control or to make a statement; she was literally glad to be still and close her eyes for a minute. She wasn’t making up the pain in her shoulder that she was crying about. And she wasn’t forgetting which shoulder was “hurting;” they were both hurting — she was hurting all over.

Poor baby.

We are all 3 lucky she didn’t just smack us across the face for not leaving her alone and letting her go to bed.

detectiveLife with a mostly nonverbal child is challenging. It’s guess-work. Even when I think I know her so well and know what she’s saying even before she “says” it, it is still guess-work at best. I am a constant detective, looking for clues. And I think I’m a darn good one most days. But it’s still guess-work, putting clues together and trying to make them make sense.

I was so happy that Chloe’s school aide was able to put words to how Chloe was feeling. The next morning when I texted the aide to find out how she was feeling (and probably how Chloe, too, was feeling), her answer was, “Like death.” Chloe had told me she felt yucky, but I didn’t realize she was feeling like death. I guess I’ll up my sympathy and carry on.❤

Forever Changed

To some it may have looked like a normal ol’ Valentine’s Day party. But it took my breath away.

I had an overwhelming feeling that I was witnessing history…that the world was changing right before my eyes…that the walls had fallen and eyes had been opened.

I needed to photograph it, to save it, to somehow capture what was happening.

I begged for eye contact with other mothers, searching their face to see if they were seeing what was happening right there before our eyes — to our children. It was happening to our children…to their children.

They were being changed. They had already been changed, actually. At the party they were just living in their change. They were living changed. And it was so natural. So beautiful.

Did the children even notice it? Did they feel it? Did they remember what life was like before they were changed? Did they even realize it happened? Did they understand the magnitude of it? the implications of it? I don’t think so.

It was just their Valentine’s Day party. They were having fun with friends at the 6th grade party. There was food, Valentines, hearts, and cupcakes. There was a photo booth, props, paper plates, and Capri Sun. There was laughter and giggling and pushing and teasing. They were friends.

They. were. friends.

Chloe Valentines 1

What I witnessed that day was a changed community. A changed community. 60-some-odd 6th graders who are forever changed. Forever different. And they were changed by my girl.

This group of children does life with Chloe. It doesn’t matter to them that she uses a wheelchair. It doesn’t matter to them that she doesn’t say much. She’s a part of the group, and they’re friends. She does life with them. They know her, and they’re comfortable with her.

They don’t greet her each morning because they pity her. They greet her each morning because she’s their friend.

They don’t get freaked out when Chloe gets intent on a mission and forgets to watch for their toes in her path; instead, they jump out of the way with a chuckle. They don’t stare when she cries out in class; instead, they ask her what’s wrong and encourage her to use her words. They don’t dismiss her when she makes noises with her mouth; instead, they use the context, look for clues, and figure out what she’s trying to say.

They listen to her. They know she has something to say, and they listen to her.

Valentines 2

And these 6th grade boys and girls? They will someday be Chloe’s next door neighbor. They will someday be her doctor or her boss. They will someday be Chloe’s pastor. And they will know her. They will be comfortable with her. And they will listen to her.

They will stand up for her and will speak up for her … because they know her and they know what she’s saying.

Valentines 3

These 6th graders aren’t like the kids at the mall who stop and stare at the sight of a girl using a wheelchair. They are no longer like the children in the store who act afraid when Chloe approaches them.

No. They are changed.

They are changed because they know Chloe.

Ask me if inclusion works. Ask me if I believe that all students benefit from inclusive education. Ask me if I think it will change the world.

Yes. Yes, yes, yes.

I just watched it happen. It happened over the last two years right in front of my eyes.

They. are. changed.

…Forever…

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And these 6th graders? When they see a girl at the mall who uses a wheelchair? Will they stare? Will they be frightened if the girl smiles at them or acts interested in something they’re holding? Nope. I’m pretty sure they will smile at her and say, “Hello.” And I’m guessing a good number of them will shake her hand or give her a high-five. They may even stop to listen to see if she has anything to say. Because they are forever changed.

Our Castle

Recently while driving home after having gathered the kids from school one afternoon, Zippy surveyed our van and smiled. Then in a self-reflective way, he slowly thought aloud, “This is like our little house, isn’t it?” He was referring to our van.

Strewn around in the van were backpacks filled with books and homework, shoes and socks that are always stripped off after barely getting the van door closed, snacks and empty snack wrappers, and a variety of office supplies and beauty supplies–because I tend to keep my car stocked with supplies we may need at some point.

“Yeah, this is like a little house for us, isn’t it?” he repeated, his wheels still turning.

We had each other, we had entertainment that we enjoyed pouring from the speakers of the van, and we had comfortable furniture to relax in. That sounds like a house…like a home.

Even though I had already twice agreed with him that, yes, this van is like our little house, he repeated his thought again because that’s what he does. “This is like our little house. We could live in here. Especially if the wheelchair wasn’t in the back.”

Our van keeps us warm in the winter, cool in the summer, dry whenever it ever decides to rain in Texas, and shields us from the sun and other elements. It is one of our safe havens where we spend more time than most families probably do.

“Elliot and I could sleep in the back even,” he continued thinking.

I agreed every time and smiled with him every time. It was like a little house. It had everything we really needed.

But in the end, Zippy decided he’s glad we don’t live in our van. He’s pleased that we have a much bigger house than our van is. In fact, comparatively, our house is a castle.

So, yeah, we’re both glad we have a castle to live in.:)

 

Close to Home

This week Chloe’s school has had a very scary, sickening chain of events. Evil and grossness and vile intent have hit way too close to home.

Read the story here.

The teenager was a classmate of Chloe’s. For 13 weeks, a pedophile sat in class, posing as someone he was not. With the sole purpose of gathering new, innocent, young victims.

Sickness.

Our elementary school community is devastated.

And our family was forced to have some really yucky conversations that no parent should have to have with their children. Conversations that no child should have to listen to, respond to, or think about.

The chances of Chloe being involved in any wrong-doing is slim to none since she has an aide with her most of the school day. But still the ugliness and the knowledge of such close evil has been a very hard pill to swallow.

We are left feeling vulnerable and violated.

Fear has found a way into our home. It has crept in and sneaks into our thoughts. And it fuels our imagination which, in turn, feeds the growing fear.

We wonder what else and who else are not what they seem. It’s pretty hard not to go there with your thoughts.

While the world went about its ways today, it was hard for our school community and our family to think about anything else.

It’s not fair that our children have to think on such things. It’s not fair that the school counselor had to spend her day talking to frightened students and parents.

At Elliot’s school, he was surprised that the topic only came up once. It was in his computer science class. Someone mentioned it, but the teacher was unaware of the grueling story. So the teacher pulled up the news story on his computer, and the class watched the news story together.

During the news story, Elliot said some of the students were laughing about it. They somehow found the deception and evil humorous. Elliot was appalled and spoke up about it. He explained with emotion that it’s not funny — “for 13 weeks my little sister sat in class with a pedophile!”

But maybe until you feel it close to home, it’s not real enough to be serious– at least to a roomful of high school students.

And tonight, life goes on. Hopefully victims are receiving comfort, teachers and administrators are having a good cry and a break from the media and the outraged public.

And hopefully time (and God) will do its work on lessening wounds and memories.

And what will likely remain and outshine the nastiness is the power and strength in community. In family.

A Birthday Celebration

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A birthday is certainly cause for balloons.

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Today was my dad’s first birthday since he died 4 months ago.

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The kids and I commemorated by writing love notes on balloons.

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“Happy Birthday!”

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“I love you!”

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“I miss you!”

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“I wish you were here!”

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“HBD”

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“I love you, Papa!”

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We took them outside….

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And then we counted down. 3-2-1-Go!

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And set the balloons off up to heaven.

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Happy birthday, Papa!

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We love you!

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