Last night the RIAO docs held a web chat specifically on the PRECICE device they developed for internal lengthening. The original physician development team consisted of Dr. Standard, Dr. Herzenberg and Dr. Green. For some more information about the device visit here.
I have written about it before and it is a huge break through. I am so grateful our children have doctors who are also dreamers. You’d have to be a dreamer to come up with such things! Nicholas is very lucky his last two lengthening surgeries will be with the PRECICE. Here is some info from last night’s chat to help determine wether/when it will be an option for your child.
External fixators will still remain a reality for fibular hemimelia treatment. This sounds like bad news to new parents wanting their child to benefit from the latest technology, however the external fixator felt like a miracle to us when we saw what it did for Nick’s leg (it was much scarier before it was on Nick’s leg compared to after). Nick had three lengthening surgeries using Taylor Spacial Frames and I remain grateful for that technology!!! While not easy, it is very doable.
Wether internal or external, these devices enable our children to maximize the function of the limbs they were born with. They bring my son closer to the dream I have had for him his whole life, to hop out of bed at maturity with two feet hitting the floor… To feel the sand between all of his toes… I know that he would be ok without these things but I am so grateful, that so far, he does not have to be.
Dr. Herzenberg on NPR! Clubfoot and how the Internet changed treatment options
When Nick heard Dr. Herzenberg’s name he cheered. He was so excited.
Tomorrow is Nick’s official post op visit at the RIAO. I don’t know if he’ll see Dr. Standard since it is not a regular clinic day but he’ll see Allison. It was about 3 weeks ago I think that we went on a random Wednesday because Nick started having pain in another area of his leg! He also had patchy, swollen, tender, redness so Allison prescribed and antibiotic. For the leg pain he got a big grey inflatable boot. Very fancy and did the job well.
The redness, swelling and pain on his skin was a bit scary because an infection of the skin could spread to the bone and the plate and if the plate had to be removed we had no idea what would happen. When I asked Allison she said “That’s when Dr. Standard works his magic”.
Ah yes the Dr. Standard magic. Sometimes I just have to take a deep breath and have faith. So far all has been well. The swelling was gone within 24 hours and so was most of the redness. His leg looks great, long and lovely really. He’s happy with homeschooling, making friends, living his life (albeit with a big boot on his leg and a hard splint on his arm) not much more I can ask for. If finally feels like we are actually moving on. I hate to even type it because you never know what the next x-ray will bring but Nick is walking without pain. That’s pretty great in and of itself!
Here’s a photo from this weekend. It was such a joy to be able to do something so simple as go to an amusement park. Watching him have fun was the best thing ever!