Posts Tagged ‘disability’

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….

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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. ❤

Friendship

I recently watched a video about a boy with Down syndrome who was included into a general education setting. The video gave a nutshell picture of the successes and the challenges of such a placement for this student.

I cried at the lunchroom scene the film included. The student, who had some “behaviors” that were worsening in 6th grade sat at the lunch table with a group of other boys. Without warning and quick-as-lightning, the boy reached over and grabbed another student’s roll right off his tray. The breadless boy and another student demanded the return of the dinner roll, telling the boy that “you can’t take someone else’s food!” But the boy held the roll tightly in his fist and refused its return, ignoring his friends’ pleas.

Finally, the breadless boy and all of the other boys got up and moved together to another table, shaking their heads in disgust and frustration. The boy was left at the table all alone with his stolen piece of bread still clenched tightly.

It was heartbreaking to watch. The boys tried to reason with the bread thief; they tried to be patient; they reminded him of the social rules. But in the end, they got frustrated and left.

And you can’t blame them. They are kids. Hungry kids. And their rights had been violated, basically. No, you cannot blame those boys at all. I mean, who knows what else the boy may snatch before they have a chance to eat it. And who knows how many items he’s snatched from them over the years while he struggled to control his impulses. And even the best of friends, the most patient of saints, has his limitations and feelings.

I don’t exaggerate when I say that only one day later I got word from school that Chloe had snatched her BFF’s cake pop at lunch! Yes! Seriously. Snatched it quick-as-lightning right from her lunch bag. And… and… and licked it!!! I’m not kidding! Tell me it isn’t so!

The movie played out in my head: all of the girls getting up, angry, and leaving Chloe at the table to finish her lunch alone.

I’m so grateful to report with a very full heart that Chloe’s BFF simply snatched the cake pop back, wiped it off, and ate it. Because that’s what BFFs do. And because Chloe’s BFF responded like she did, no one got up and left, and no one got angry. (Although I’m guessing Chloe was the recipient of several lectures from her friends about behaving appropriately and respecting others.)

But you can be sure that I’m terrified for the day Chloe’s BFFs run out of patience. I am still very much aware of that possibility. And it makes me sad.

But today: grateful. Grateful for friendship.

Eve

Today at church the children heard the story of Adam and Eve. The story included the apple, the serpent, the fig leaves, and the Garden of Eden.

For the game that accompanied the lesson, the kids dressed each other up as Adam and Eve.

Chloe was Eve for her team. The girls ran around the room, gathering supplies, and quickly decorated Chloe. Within moments she was completely decked out in Eve garb. She wore green crepe paper, a wreath of leaves on her head, and … a cool pair of shades.

This, folks, is what inclusion looks like at church. 🙂

photo

And now, for the rest of the story….

When it was time for the Adam and Eve game, Chloe got my attention and let me know she wanted to play the game. It’s not uncommon for the Sunday morning game to be a running around relay game that she has a hard time participating in. So this time she wanted to make it clear that she did actually want to play.

I happened to be the adult in Chloe’s group for this game so I informed a couple of the girls who were sorta taking charge that Chloe wanted to play this game and be Adam or Eve. They both looked at me like perhaps they didn’t speak English, but knowing that isn’t the case I didn’t restate my message or check for understanding — I thought the request was pretty clear and that it was a fair request from Chloe since she can’t really actively participate in a lot of the activities.

Well, lo and behold, when the game leader went around the circle and asked who from each group would be Adam and who would be Eve, these two girls announced that the two of them would be Adam and Eve. Hmmmmmmm. I guess I should have checked for understanding after all. 😉

I very casually reminded the two of them that Chloe would like to either be Adam or Eve and asked them to decide which of them would give Chloe their role. This time they looked at each other like maybe they didn’t speak English and sorta halfway pointed at each other silently. I gave them about a minute to work it out between them in whatever language they might choose, and then I asked them which role Chloe would be playing in the game. Again, I got confused looks that I finally determined were not looks of not knowing the language but were simply looks of total human selfishness (don’t hate! — we all struggle with it!!) that were just unwilling to budge for another person. I gave them one last opportunity to redeem themselves by giving an encouraging, knowing cue: “Girls, which of you will make a kind choice and be a good friend?”

After no action from either girl besides continued confused, stuck expressions, I let them both know that they were both relieved of their duty of Adam and Eve and that instead Chloe would be Eve, and a little boy on the team would be Adam.

Now before you go calling me a meanie, know that I would’ve done the exact same thing for any child if I saw a rare opportunity for him/her to fully participate. And also know that if I were the parent of one of the confused girls, I would want another adult to step in and help train my child’s heart in kindness and compassion and unselfishness. So no hard feelings, ok? It’s just part of children’s ministry. 🙂

I tell this story to illustrate the fact that sometimes inclusion is natural and friendship is natural and that amazingly cool things just happen in the hearts of children sometimes. But other times, children need guidance, and inclusion has to be guided and staged. But guess what? If done correctly, both types result in inclusion. And guess what else? My kid is blessed in both instances (if done with dignity and taste). And the other kids benefit, too, because which of us could not use a little heart training? Which of us couldn’t use a little “unsticking” when our hearts are stuck in selfish gear?

In the end, Chloe enjoyed getting “decorated” as Eve, and the other girls enjoyed running off, gathering supplies, and decorating Chloe. It was a win-win.

All in a Day’s Work

How do you prioritize when everything is ultimately important? when everything is #1?blue #1

How do you choose to spend your time when the whole list consists of urgent items?

Do you choose to breathe first or to make your heart beat first? They’re both critical.

That’s how I feel with trying to prioritize what to focus on with Chloe. How do I spend my time and energy when the needs are all so great? Where do I start? Where do I begin? Where do I focus?

Communication is #1 because everything else depends on it. If Chloe doesn’t have a way to communicate her wants and needs…if she can’t relate and give her opinion then what??

But her legs working enough to walk across the room is #1. Remaining functional enough to be on her feet when she wants to be is vital. It’s a skill and ability that we are fighting to keep. The battle against her tightening, weakening legs is one we have to fight with gusto.

black #1Her performing and succeeding in school is also #1. If she’s not successful in school, then her teachers won’t take her seriously. If we don’t work to find ways for Chloe to express what she knows…if we don’t empower her with the ability to express her knowledge, then how…how…? So this ever-growing pile of homework is top priority.

But what about practicing and exceeding in cello? It’s imperative that she grow her talent. It will allow her to be part of a “team” in orchestra in junior and high school. She loves it; she’s good at it. Her playing music speaks to people …speaks to her.

Independence and growing in work/chores/responsibility has to be #1. Self-feeding, personal hygiene skills — It’s those huge skills that will lead her to independence in life. Those skills will pave the way for self-care later in life. It’s ultra important for Chloe’s success.

Encouraging and growing her friendships should be a high priority. She has friends who love and enjoy her; inviting friends over and helping those relationships grow are key. Friendships will deter loneliness.

I. Can’t. Do It. All. There are 24 hours in the day.

What do you do when they’re all a #1 priority?

 

Being Known and Being Missed

IMG_5296As we entered the building, there were greetings and cheers.

“Hi, Chloe!”

“Chloe!”

“Yay! There’s Chloe!”

Everyone was happy to see her. And she ate it all up. She waved at her friends and her fans alike as we entered into the cheer gym for the first day of practice for a new season.

What a great feeling to enter a place and be greeted by name by friends who love you and have missed you.

I’m so glad that Chloe has that feeling of acceptance and friendship in several different settings. At school each morning, she’s greeted energetically by sweet friends. At church, folks are glad to see her and greet her by name. And at cheerleading each week, when she enters, the room erupts with excitement.

Chloe over the years has gained confidence and awareness and the mutual respect of greeting others (usually, anyway!). She will look their way or wave or say Hi.

Friendship. Relationships. Being known. Being appreciated. Being missed when you’re not there. Being loved. Being seen and noticed.

Yes, Chloe matters to people. And nearly as exciting: those people matter to Chloe. J

Update

I just wanted to give you a quick update on Chloe.
As you may have been aware, Chloe has continued to regress in her walking over the last 6 months and longer. It continues to get harder and harder for her. Doctors have no clue why. Their best guess (and the best case scenario) is that her muscles have not been able to keep up with her growth spurts. Acting on that assumption, we have been doing some pretty intensive physical therapy and stretching/strengthening exercises. She also received some botox injections last week to help loosen those muscles for a few months. Her walking may very well get worse before it gets better– it’s all part of the process.
Truthfully, the onset of puberty may also be playing a role in this whole thing. We just don’t know.
Also, yesterday she failed her swallow function study, meaning she can no longer drink thin liquids. She aspirates thin liquids (water, juice, skim milk)– they go down into her lungs instead of her stomach. So we will need to go back to thickening any of those liquids that she drinks.
We haven’t had to thicken liquids in several years. It makes me mad, actually, that we have to go back to doing that. It irks me that something Chloe had overcome and beat has come back to cause problems. I threw a couple of emotion-spewing temper tantrums yesterday after the news, very much like a child would throw a tantrum. I hate it.
The good news from the swallow function study is that she coughed when she aspirated. That is an improvement from when she was younger — she was a silent aspirator; thus, we never knew when she aspirated or not. So at least she has a better cough reflex.
In all honesty, it is troubling that she has regressed in both of these areas at the same time. We are just praying that whatever is going on in her body can be stopped and can be reversed. Feel free to join us in praying for her if you want.
Just another example of life without a diagnosis… Is this the next step in the progression of her unknown syndrome? Or is this simply a reaction to puberty that she will be able to overcome? Or what is it exactly? and what’s the best way to treat it?
Since I’m a big don’t-own-it-til-it’s-yours person, we will just continue to work hard to combat all this stuff. Hopefully she’ll beat it. She is an amazing kid and the hardest worker I know — she definitely endures through the pain. Although she’s never said the words, I think one of her mantras that she knows is truth is “No pain, no gain.”
Keep it up, kid!
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