Well, it happened.  Drew spoke of his limb difference.  I was rolling his sleeves up on a new shirt and Drew casually said, “I wish I was like other kids.”  “How so?” I responded, always carefully avoiding implanting the idea of his differences.  I was hoping that he was speaking of his legs, for which he has expressed disappointment before.  “They have long arms and mine are short.”   He had never questioned his arms before.  I am sure that at some point earlier in life he realized his difference, but I don’t know when that moment occurred for him.  I hoped that he never questioned it because he was fine with them the way that they are and didn’t see them as a disability.  I had always mentally prepared myself for the day that he would speak of his short arms and how I would respond, but I was still surprised by his sudden exclamation. Here is my chance to boost his confidence and I sincerely hope that I can use this moment to secure acceptance.

“Drew, I love your little arms.  They make you, you.  You do everything the other kids do: play video games, feed yourself, write….everything and you have half the arms they have. They do all these things with long arms and you do them with short so that makes you better than them.  Do you think that if they lost their arms that they’d be able to do these things?  They have to have their long arms.  You have short arms and STILL keep up with them.  I love your arms and everybody loves you just the way you are.”

I was pleased when Drew leaned in for a hug and said, “Thanks, mom.”  I hope that I have planted that seed of self-acceptance.

I later mentioned this moment to Daddy and he mentioned that Drew had asked him about it as well.  Nathan mentioned to him the possibility of lengthening surgeries.  Drew seemed open to it and Nathan reassured him that we’d just see what the options are.

I was glad to hear this exchange.  Arm lengthening is something we’ve thought about, but it seemed to be a much more complicated decision than correcting his legs.  Drew is already so functional with his shortened arms.  He’s one of his class’ top hand writer (believe it or not, some of his peers have far worse handwriting skills), he can feed himself and in fact, has made tremendous improvements by starting to pick up foods that he struggled with before (like pizza slices were previously difficult for him to handle), and even with his short arms he’s able to play PlayStation video games like a boss.  He can  hold his weight when he hangs on a bar, he can sit in a swing and hold on.  There’s really not a whole lot that he can’t do even with such a dramatic limb deficiency.

Given all of his accomplishments, it seems as if his arms aren’t really holding him back.  And, as far his appearance, I’ve always loved his little arms.  His hands are so adorably cute.  I swell with love watching him use his fingers and hand gestures and always have.  It is SO cute.  So, surgically lengthening them for just the appearance wasn’t important to me.

So, it would all be up to Drew.  I knew that at some point it would potentially be a huge impact on his self-esteem and school experience, but I struggled trying to think of how to gauge his thoughts on the subject without actually being the one that made an issue out of it.  I imagined bringing it up and Drew suddenly thinking, “Wait, if she brought it up, it must be because I look weird and she must not love me the way I look.”  So, despite wanting to know what his stance was on lengthening, I never mentioned it first.  And, I really struggled with how to even question a doctor about it in Drew’s presence even for just information purposes for fear that it would upset Drew.

Dr. Paley, Drew’s orthopedic surgeon who has completed all of Drew’s leg surgeries, had briefly mentioned the possibility of arm lengthening during his very first consultation, but said it wasn’t even worth a lot of discussion as it wouldn’t be until he was 8 years old that he’d consider doing anything.  Well, 8 years old is less than a year away so Drew’s revelation comes just in time.  And, it won’t be so nerve-wracking asking Dr. Paley about our options in July during our regular follow-up.

The decision will ultimately be up to Drew because, after all, it will be him going through all of the pain.  We aren’t excited about jumping into another long line of surgeries for Drew so hopefully we can put off anything invasive for a few more years at least.  I’m perfectly happy with his arms and his abilities despite them so if it were up to me, I’d forgo the ordeal for just physical appearance benefits.

Especially when the potential of additional surgery on his legs are on the horizon.  First, Drew has been experiencing pain in his left ankle, where he currently has internal hardware that was placed in July last year.  It hasn’t been hurting him to walk, but any kind of pressure on the area such as squeezing his ankle when we’re putting on his socks or shoes makes him wince with pain.  It’s a forbidden area to touch.  After collecting some x-rays to ensure that nothing in the hardware has come loose or an unknown fracture and sending them to Dr. Paley, it’s suggested that as he grows the fixator is migrating upwards where there is less soft tissue thus the pain when pressure is applied to the area.  We’ve been told to plan for a few extra days in Florida in July during our regular follow-up in case they decide to go ahead and remove the hardware.  Most people might find it odd to live with only a 24-hour or less notification of an impending surgery, but unfortunately this is our norm and it’s happened before.

Second, and my most dreaded, is that we are suspecting a leg lengthening difference.  Throughout the time that Drew’s left leg was straightened, Nathan and I would wonder whether or not his left leg would end up shorter than the right.  Just by eyeballing his leg, it seemed as if maybe it would be a tad shorter.  After his leg was fully corrected and the fixator was removed, it was hard to tell if it was indeed shorter or not.  It wasn’t dramatically shorter, just short enough that it could easily be explained by pointing out that perhaps Drew was cocking his hip back enough to create the illusion it was shorter…that if he sat straight, it would be the same length.

20150516_200522But, during his therapy yesterday, I could clearly see that Drew has a very definitive leg lengthening deficiency as compare to his right.  This concerns me because from my discussions with other parents supporting their children through their corrective leg surgeries helped me learn that Dr. Paley over-lengthens short legs because over time, the shortened leg does not grow proportionally or at the same speed.   So, without surgery, a 35-mm length difference at birth would be a 90-mm length difference after a number of years.   It appears that this is evident in Drew’s legs.

I am very conflicted in questioning Dr. Paley about this limb difference as it seems as if there is only on obvious answer and even though I knew that the potential for additional surgery is probable, in someway I guess I was in denial.  I almost just want to hide the difference from Dr. Paley in hopes of avoiding more months with an external fixator.  A part of me is wondering how detrimental living with a leg lengthening difference really is.  Surely it’s not the worst thing ever to have a shoe lift to close the gap.  Does Drew’s legs really have to be perfect?  He’s walking wonderfully now, albeit with a very unique gait so do we really want to test fate by further gambling on just how much we can get out of Drew’s legs.  But, knowing what I know about limb lengthening deficiencies, his deficiency will likely become worse. So, I’m afraid I must open that can of worms next time we see Dr. Paley.  Limb length differences are corrected very similarly to Drew’s straightening and rotating process he endured: through a fixator that is worn for a number of months and corrected with daily adjustments.

Which further complicates any arm lengthening plans that we may pursue.  Just how much can one child endure?!? It just doesn’t seem to stop.

In other less dramatic events, Drew is finishing up his last week of school and will soon be a second grader.  Drew is the only one in his class that passed every single one of his math tests, even passing his last math facts test without ever even practicing the pattern a single time.  Drew performed so well in spelling, that halfway through the year Drew received “challenge words” that were a list of more difficult words than the routine words provided to the students following the normal agenda and  he excelled with those as well.  Drew is loving school and looking forward to second grade.




3 Comments Add yours

  1. peggy says:

    Dearest Janel—I think no matter what is decided, drew will always love his family and his family will always love him. You and Nate will always manage to do the right thing for Drew and Drew will always rise to the occasion.
    We would love to come down and see all of you in July if it doesn’t interfere. Love to all.

  2. Katie says:

    i love this boy. He had my heart the day i met him (even though i was NOT #1) please tell him Katie said God made him special. Love him!!

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