Posts Tagged ‘pediatric orthopedics’

True to Form

As you probably know, Chloe had a major surgery a week and a half ago. And as you also know, we were having some major second thoughts and cold feet in the days leading up to the surgery.

But there is something else to tell about the day before Chloe’s surgery that really helped me regain my focus and purpose for going ahead with surgery.

As I’ve already admitted, the day before surgery, as I was trying to pack and prepare for a week in the hospital, I was an emotional wreck. I had stopped to hide in my bathroom and cry my eyes out several times.

At one point, Zippy randomly pulled out a dvd from a photo shoot of the boys from years ago. In the background of the dvd is a beautiful instrumental song. And the dvd itself is fairly tear-jerking because of the beautiful quotes and sweet photos of my sweet little boys.

While Zippy and I were watching the dvd slideshow, unbeknownst to us, Chloe heard the beautiful music and began to make her way from her bedroom into the TV room to dance to the beautiful music.

I heard a bump in the hallway and turned to look. Chloe had stood up in the doorway of her bedroom and had WALKED, bent at the hips and bent at the knees, all the way down the hall, reaching straight out with both hands to help steady herself with the walls. She was STANDING in the doorway of the TV room and DANCING to the music.

image2-2

All of this while I was having my is-this-the-right-decision doubts and cry fests! There my girl was on her feet! Working hard, walking in her crouched down position all the way down the hall, reminding me that THIS is why we are doing this surgery! Walking is important to my girl. She wants to walk; she wants to dance. And THIS is WHY this major surgery journey was the right decision.

image3-2

Doubts? Goodbye.

Fears? Present, but understandable in the face of such a major surgery.

2nd thoughts? Nope. Knowing this surgery was the only way to keep Chloe on her feet made this decision a very clear cut one.

Chloe walking down the hall at just the perfect time? It was SO TRUE-to-FORM for her! Amazingly remarkable at just the right time.

image1-3

Thank you, Chloe — Thank you, God — for making it very clear.

Forward march!

Advertisements

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….

%d bloggers like this: