5.7cm and Nick’s third lengthening ends!

5.7cm!!!! We could have continued and gotten to the 6cm goal but Nick said enough and what he says goes. He’s not having any pain really and he certainly isn’t taking any pain medicine. The pesky pin site infection seems to have cleared up just fine. But Nick just wants to get to the healing part of the process. He wants to go back to school. 5.7cm, plus a straightened tibia and a reconstructed ankle is pretty wonderful. Nick’s working hard and it is important for him to have a say in this. We’re a team and I like letting him lead the way when we can.

Next week he’ll have a small surgery with Dr. Standard to get the bottom portion of his fixator off and his foot will be free! He says the foot part is the most annoying so this will make him very happy. He’ll also have a wire removed from the bottom of his leg but he will need a half pin put in to add support.

In general it was a great appointment today. We were at the RIAO for a long time but it’s because we were making plans and Nick needed an additional xray because it turns out he has some knock-knee that needs to be corrected. Dr. Standard needed to measure it to create a new small schedule of turns. The lengthening is still officially over since this wont add length.

It is such an amazing journey. None of this is easy but none if it is as scary as I imagined it would be. It is also so wonderful to be at the RIAO where this rare condition is so normal! Nick is one of hundreds of children they have treated for fibular hemimelia. Seeing other people in fixators really does make it seem like less of a big deal in a way. It also helps to have support and encouragement. Marilyn and Lee are two of my favorite people. The RIAO would not be what it is without them. We got to chat today and it reminded me of how lucky we are that they are there for us!!!!! Dr. Standard is wonderful of course. I’ve written that plenty of times and so have other parents but he does not work alone. There are all kinds of necessary people at Sinai. Today’s included the valet parking men. Sadly I am literally not capable of getting the wheel chair in and out of the car. They are always so helpful! It makes my day so much less stressful. It is totally worth the usual $7 plus tip!

Then there was the stranger in the cafeteria who carried our lunch tray because she saw me struggling. That kind of kindness make such a difference! I would never have asked someone to carry it for me. She came right over and helped. Thank you random lady!

This surgery has been hard for Nick in a way that the others were not. He understands so much more but he still says it’s worth it. He can judge that for him self now and I am so glad he feels that way. I feel it too.

2 thoughts on “5.7cm and Nick’s third lengthening ends!”

  1. Thank you for sharing both the hardships & successes of your journey! As a new FH mom, it’s really touching. I’m glad to hear this lengthening is done & you’re son is doing so well!

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  2. three lenthenings! Wow! I thought Perthes was bad…..Your right about the fixator though, when you see other children with them on and all different kinds of fixes, and all different kinds of children it really makes it seem, well, not like your kid is different……Good luck to Nick on the recover, My son had his fix off last may (for perthes) He is a Paley patient, he was released for full actiivity March One….You will see when the fix comes off the healing process and the movement will come quicker than you could imagine….When he started back at taekwondo last week, I was chatting with several parents and they could not believe that last year at this time he was barely walking and had to be in a chair, what a difference a year makes……

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