Fibular Hemimelia: a pictorial of Sixteen years

I wanted to compile a chronicle of pictures of Ethan's journey thus far.  Sometimes it's helpful when thinking of the future to realize how far we have come!

I wish I had taken many more baby pictures of his feet and legs!  When Ethan was born, his nine toes surprised us, but doctors did not provide a diagnosis of fibular hemimelia until Ethan was 9 months old.  This was after I noticed his leg length discrepancy when he was three or four months of age -obvious in the pictures below! (2004)

By five-years-old, his discrepancy was about 5-6 centimeters, and we had made our way to Baltimore and Dr. Standard.  He experienced no problems or limitations -aside from an occasional knee pain or two (probably caused by his valgus (knock-knees).


 

Ethan's first surgery was performed four months before his 7th birthday; this involved the placement of an external fixator on the tibia/fibula and an 8-plate insertion.  The first six weeks were rough -as he lost the ability to bend his knee without excruciating pain.  After much therapy, however, he began to make great gains.  His leg was quite cooperative, and aside from a few pin site infections, things progressed rather smoothly.  We stayed in Baltimore for 10 weeks post-surgery in order to be near Dr. Standard and the physical therapy department. Ethan had land and pool therapy three times a week and x-rays every two weeks! We were able to watch his leg grow 6 centimeters as new bone developed (2011)

 

Six months later, Ethan had his second surgery - to remove the fixator and replace it with a thigh-high cast. (2011)



Though a bit cumbersome, wearing a cast for eight weeks was a sigh of relief in comparison to the ex-fix!

 



After a couple of months, the first cast was replaced with a removable one, and after almost 9 months, his leg was free!  Ethan began therapy to strengthen his leg and to learn to walk with a normal gait.  As the picture above shows, the valgus in his knee was still an issue after removal, and his scarring was quite prominent. (2012)

 A year after fixator surgery, Ethan had his third surgery to move the 8-plate in his femur to his tibia -to continue working on the valgus in his knee -and ultimately straighten his leg.  Dr. Standard also attempted to release his scars in order to correct the deeper scars that wanted to adhere to the bone (pins from the ex-fix had pushed the skin to the bone). Ultimately, some scars simply were corrected while others returned to the previous "sunken" state. Recovery was surprisingly quick with minimal pain. (2012)



The pictures above show the difference that 8-plates can make in the overall "straightness" of the legs!  However, fibular hemimelia legs are apt to slide back into a valgus position -and that's what Ethan's legs did -requiring another 8-plate transfer -this time from the tibia back to the femur.

This is a pic of the 8-plate that has been so necessary, and yet so troublesome!

Ethan's second 8-plate surgery (fourth surgery in total) was successful, and Dr. Standard again performed a scar release, this time more extensively -so that the scars were reopened and stitched.  This was a rough recovery -being in quite a bit of pain following the surgery. His pain subsided within a few hours, though, and he was excited to finally have crutches, having graduated from the walker! The recovery period involved soreness and about ten days of limited activity. (2014)

 

Less than a year later, Ethan's femur slipped back into a valgus position, so another 8-plate surgery (fifth surgery in total) was required.  Dr. Standard also decided to address his ankle! As the pic below illustrates, his ankle turns in, as it is also in a valgus position.  Therefore, an 8-plate of sorts was inserted in the ankle as well, projected to take a couple of years to correct.

 

 This was the first surgery in which Ethan experienced any anxiety.  He had to be given an IV prior to being moved to the O.R., and he had more questions than usual.  Being ten-years-old, he had a greater understanding of what he faced.  Despite his reservations, recovery was, again, rather quick -aided by the fact that we were snowed in for a few weeks during this one! (2015)

In October of 2015, Ethan had a sixth surgery to have both 8-plates removed -one from the femur and one from the tibia.  Recovery was rather smooth -and he enjoyed spending his P.E. time talking to one of his favorite teachers, Mr. Trent! (2015)

By March of 2017, Ethan's leg had, yet again, slipped into a valgus position, and this time, he was experiencing a lot of ankle pain.  Dr. Standard decided to perform an 8-plate insertion at both the femur and tibia, but to also address the ankle.  He cut part of Ethan's tibia that was impinging on his ankle in order to improve his flexion and hopefully help with the pain.  Because this procedure was more invasive, it required an overnight stay in the hospital.  Following the procedure, Ethan's leg was wrapped tightly, almost cast-like, and we returned to Baltimore in April to have the wrappings removed and replaced with a boot.  This seventh surgery proved to be quite painful for Ethan; the ankle procedure especially gave him a great deal of discomfort. (2017)

In April of 2018, both 8-plates were ready to be removed.  This was a simple, eighth surgery and recovery, and Dr. Standard declared Ethan holds the record for 8-plates! (2018).

In November of 2019, Ethan had his 9th surgery! This was a very difficult one, as Dr. Standard inserted a Precise Nail in the femur in order to lengthen Ethan’s leg 6 centimeters. This process involved the use of a magnet that, when placed on the leg, turned the rod inside and lengthened the bone. We stayed in Baltimore for 3 weeks this time in order for Ethan to receive physical therapy and to go to clinic appointments every two weeks. Once we returned home, we had to make the trip to Baltimore every two weeks for 3 months! Ethan continued physical therapy until May.  

Ethan’s 10th surgery was the result of an accident. Unfortunately in May of 2020, just a couple of weeks after finishing physical therapy, Ethan fell off a scooter and broke his hip! Because of the rod in his femur and the tightening/pressure on his hip from the lengthening procedure, the hip was more susceptible to breaking. Ethan describes this experience as his most painful to date. Dr. Standard inserted screws in Ethan’s hip, and he was in a hip brace for about 2 months. He returned to physical therapy once again to strengthen his hip and work on his gait. This all happened during a global pandemic! Only one parent was allowed in the hospital!

Ethan’s 11th surgery will be in June of 2021. This will be performed in order to remove the lengthening rod and the hip screws.

While you're here with me, can I just say that God has a plan for my son -that his diagnosis of fibular hemimelia -though labeled a "defect" by the world -is simply part of God's plan for his life.  Psalm 84:11 reassures us that God will not withhold any good thing from those who walk uprightly.  God has not chosen to withhold good things from Ethan; he promises, instead, to work all things -including this, to his good!

Grace Based Parenting because kids aren't standardized tests

Somewhere, somehow, I bought into the lies the world tells us about our children, but God is slowly doing a work in my heart to teach me the right way to see my three blessings.  What the world often uses as a measurement, God never uses.  I can’t find any biblical evidence of tests scores being an indication of right standing or a marker of one’s character.  Yet, I’ve found myself measuring my kids by their grades or, as sad as it sounds, their SOL scores–sometimes embarrassed when they haven’t measured up –and sometimes too overjoyed when they have.

Emily asked me once is if it was bad to have thin hair because they sell shampoo to make your hair thicker and should we get some for her? An obvious indicator of the amount of times she’s heard me say, “I can’t do anything with this thin hair of yours.” Kinda makes me a bit nauseous to think that by eight you’re already convinced that even your hair doesn’t pass the test.

Why is it that we allow the machine that is the media or the department of education or anyone to determine the value of our children –the worth of ourselves?

I remember a conversation in library school between mothers who were boasting about their children and the fact that their kindergartners had never “pulled a light,” and how they’d simply die if one came home with a disciplinary note –how parents today just needed to learn to parent their children.  I sat out of this one, given the fact that one of my children, not to name names, pretty much pulled a light a day for at least two years.  And I wondered if I should think less of my talkative one –who typically wasn’t disrespectful, just had a lot to say –and had God not intervened, I probably would have gone home and punished him for his preschool days just because I had lost out on bragging rights in the library.  If you’ve been around me much, I’m sure you know I don’t let much air fill a conversation –and I can certainly see where my kids have learned the art of conversation.  But isn’t that okay? Is being quiet the only thing worth celebrating in our children?  Or if you have a quiet one, one someone is always trying to pull out of her “shell” –one you’ve been made to see as odd or antisocial or somehow misfitted with the rest of the world—don’t you think there’s a place for her –a God ordained place where her quiet, reflective nature can be used.

Somehow we’ve erected this childhood idol –this straight A, rule following, college-bound, polite sports star that sometimes, if we are honest, we really want our kid to be.  We want the facebook picture of the most valuable player –but what is it that we are really being taught to value? Satan always lies, ALWAYS –and he always distorts truth, ALWAYS –and we have to be good discerners to catch this subtle lie that’s invading our ears.

The one who finishes her work on time, colors within the lines, says please and thank you –sure that girl has potential, but I was that girl –and I allowed perfectionism to almost claim me on many occasions because I internalized that A’s were good –therefore, the more A’s I produced, the better I was –and the more I was rewarded with praise (from well-intentioned people) and scholarships and awards which only fed my need to keep achieving to keep being “good.”

God doesn’t have an achievement system, though-- he has a grace based parenting approach –a “my grace is sufficient for your needs” approach –a “you don’t have to work to please me” approach –a “you’re created in my image” approach –that looks a lot different that the approach the world is embracing.  And I don’t want to be a part of the world.  I want to be SET APART instead.

Do you know what He’s teaching me to love most about Emily? How about the fact that whatever she eats inevitably finds its way all over her face –and usually in her hair –and on her clothes.  She wears one of those KoolAid grins –the kind that brings a smile to anyone’s face who sees her.  She’s the kid whose teacher says, “I bet there’s never a dull moment in your house.” –and I want to embrace this –to run with this –to enjoy this –this girl of mine who knows how to live in a way that I still haven’t figured out –who enjoys each second of each day to the fullest –who’s still talking when I’m walking out of her room at night –and wakes up with this hair that has never figured out how to be tamed.  Can I just love this about her –and stop worrying about spelling words and lady-like speech and just relax a bit and see what God’s going to do with this one?

And this middle one, this entertainer, the talkative light pulling one –who has endured so much more than me so far.  Can I just love the fact that he corrects everything I say because he knows every random fact in the universe including when all three of the three Stooges were born and when they died and how to make Origami versions of all the Star Wars characters.  Instead of pushing him to “reach his full potential,” can’t I just let him read all the corny joke books he can digest and useless information about Elvis or his fascination of the week? Can’t I just like his quick wit --that I’m sure got him in trouble the day he asked how M&Ms and cheeseballs could really help him and his classmates on standardized testing—and see how God uses all this?

And this last one, this first one, who seems so old, and so young, too –can I just like him –in his boots and jeans and t-shirt –and his pickup truck.  He was the one whose blonde hair I kept in a bowl cut –wasn’t that the sure fire method of creating a prepping boy –one who would like to read and like school –and be like me and fulfill all these meaningless arbitrary expectations that I created? I’m ready to watch him now, God’s helping me –to watch him be loyal to this group of friends that he loves and to work hard outside with his hands –doing a man’s job –and to see who He wants him to be –that will so exceed what I could have ever dreamed up in this head of mine.

Can I encourage you, as he’s encouraging me –to love your little one right where they are?  Can I remind you, as He’s reminding me, that slow workers sometimes do the best work –and that dawdling and doodling isn’t sinful.  That it takes all kinds –and that standardized isn’t a term that applies to relationships- to real love- to God’s design.