Not always just about diabetes

When I was pregnant with my son, A, we found out he was going to be born with bilateral tilapes, better known as club feet.  Basically his little feet were turned in at a 90 degree angle.  We were fortunate in that apparently some are born with not all of the necessary bones, and some are turned up, where the feet are touching the leg.  Not our A.  His were just turned in and needed correcting.

 

 

 

 

 

 

I was around 20 weeks pregnant when we found out about the club feet.  So it gave us plenty of time to do research before he was born. I had never known anyone with this condition before. It didn’t run in either of our families.  It seems to be a “genetic fluke”.  I soon found out that many celebrities/athletes had been born with it and overcame it – Troy Aikman, Kristi Yamaguchi, Damon Wayans, and many more.  I became “that” mom that went into dr’s appointments saying “I was reading.. ” and you could just see the dr smile and roll his eyes. 🙂

When Alex was 7 days old, we took him to Scottish Rite hospital and they put him in his first of 5 set of casts.  Mommy had to leave the room for that. 😦  I knew what to expect, but when the dr said “Let’s roll some casts” I had to leave. So my poor husband had to stay in there with him.  But as I was sitting in the waiting room crying for my baby, I saw other people’s babies and children go by – some without limbs, some with prosthetics … and quickly realized it’s not that bad.

 

 

 

 

 

 

We went back and got a new set of casts put on every week for 5 weeks. Then when he was 6 weeks old, he had a procedure called a Tenotomy done- basically they cut the achilles tendon so lengthen it, otherwise he’d walk on his tiptoes forever. Then he wore that set of casts for 3 weeks.  After that he went into what he later dubbed his “night night shoes” that he started out wearing 23 hours every day (30 min break in the morning, and another 30 min break at night for a bath).  Gradually over the next several months, those hours were reduced until he was only in them 12 hours a night.

We used to find him sleeping like this ALL the time

 

 

 

 

 

 

Age 4 is the recommended age in which the bracing can typically stop. Took him to the dr around his bday and got the green light to stop the braces.  Yay!!  So we made a HUGE deal out of his 4th birthday earlier this year.  I even went out and bought him footy pj’s because he’d never been able to wear them before. 😦

Then one day a couple of months ago I started to notice something was “different”.  I am uber aware of his feet, and actually everyone’s these days, when it comes to how they turn in, etc.  Most people probably would never notice anything different about his feet.. but a mommy knows.   So I took him to the dr and sure enough, he confirmed my worst fear.  He was showing early signs of a relapse and we were to put him back in the braces immediately. 😦    Ugh.  I am SO incredibly thankful that my child is so easy going.  He was perfectly fine going back into them at night.  And frankly, since he never knew life before casts/braces, it is probably a comfort thing for him, as sad as that sounds.

First night back in the night night shoes

 

 

 

 

 

 

 

 

So our routine that we thought had stopped back in February .. has started back up again.    The dr said we can give him a break on the weekends, so we usually let him choose one night over the weekend he wants to sleep without the night night shoes.  He’s SUCH a good sport about it and has never once given us trouble with the shoes. I cannot imagine how it must be for those parents that has a child(ren) that fight them. It would be heartbreaking.  Part of the reason I think it’s been so “easy” is we’ve been compliant from the very beginning, and frankly he just doesn’t know any different.

So we’re in the shoes at least until age 5.  I haven’t noticed an improvement yet, and frankly between you and I, I see them getting worse. But I’m praying and hoping that the shoes will correct the relapse and that we don’t have to put him back into casts, which would be the next step.  We go back in November for a follow up so we’ll see what his dr thinks by then.

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About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 17 years; currently on the Medtronic pump and CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
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3 Responses to Not always just about diabetes

  1. Scott E says:

    Wow, what a lot for a growing kid to go through! I sure hope it works this time. And you should be proud of him; even though it’s all he’s known, he seems to be taking it really well.

  2. Sara says:

    Such a cute little guy! Doesn’t seem to phase him too much and I hope this relapse is a quick fix and the last one he needs!

  3. Colleen says:

    Hoping that this one is the “charm” and does the job!

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