So if my memory is correct Nicholas has lengthened 4.2cm’s. The gap is pretty easy to see! He’s near the finish line, though there was a moment of confusion about what the finish line actually is. I think it’s 5cm. Dr. Standards PA thought even legs. We will just go back Monday and get new measurements and go from there.
I got to ask my question about the 8 plate not fixing Nick’s valgus and Chris basically said there are a few ways to fix it but there is time. I am choosing to let that worry go until I can chat with Dr. Standard about it in depth, some time down the road. For now things are going so well, why not focus on that.
Nicholas also had physical therapy to check in on how we are doing at home and the therapist was most impressed. His knee is at 95 degrees. Hip was a little tight but overall all is well and we don’t even necessarily have to go back as long as things keep going well. I think Steven should switch careers and become a physical therapist. He’s doing great, although he credits Nick. PT for lengthening is not an easy thing and it is vital. Mostly I would never suggest families do as we have done but we have and it was certainly harder when Nick was younger. DIY therapy is not for most people and if Nick had not continually improved his ROM we would have absolutely gone back to the pros more regularly.
So maybe one week left of lengthening, maybe Nick will go back to school next Tuesday. Maybe we can get to 5cm complication free… fingers crossed, thoughts and prayers requested, the finish line is near!
Nicholas will be having surgery to insert the PRECICE internal lengthening device on March 24th. It is hard to believe this is happening so soon. All his points on why he wants it to be now make sense and according to Dr. Standard his leg is ready. According to Nick’s exceptionally supportive teacher it is a good time. Now I need to be ready.
Lengthening is not a simple thing. Nick will be in the hospital from Tuesday to Friday most likely. During the surgery they cut his femur and insert the device. At home we will use a magnet to activate the device and make Nick’s leg grow. Nick has never had a femur lengthening before but he has lengthened his tibia 17 centimeters with external lengthening (through 3 sets of procedures). Almost everyone says internal lengthening is a lot easier, still I know that doesn’t mean it will be easy.
I am guessing the lengthening portion of this round will be 6 weeks to 2 months. It really depends on how much length Dr. Standard thinks we should go for. Nick will be completely non weight bearing on his right leg during this time. Then his bone will need time to heal and I am not even sure what that part of the process is like. We do plan to document everything as completely as possible so that we can help other fibular hemimelia families to know what to expect when it’s their turn.
I really didn’t think this was coming so soon. I am usually the gal with the answers, and now I am totally not. I don’t know what this will be like. I don’t know how long it will take. I don’t know when to anticipate being back to “normal”. Nicholas is at a sleepover right now. Life does not get any more normal than that!. He’s had his first acting experience… Shakespeare no less, which was truly awesome. He’s played basketball and football this year. Life has been, and is, good.
Which means life might as well get shaken up. That’s how it goes. It can still be good. I started graduate school last month (I thought maybe that was enough shaking up…), not thinking surgery would be so soon. The external fixator kind of took over our lives when Nick had lengthening in the past. I don’t know if this will be the same. Nick asked when I will get my work done and I told him I would work in the waiting room while he is in surgery and then while he is playing video games in his room. For some reason he didn’t love the idea of me doing homework while he’s in surgery. He said he would be upset if I was not worrying about him. Imagine me not worrying about him! He has no idea.
I will worry when he is in surgery but I will not stress in the mean time. Ok I will try not to stress in the mean time. I have faith that we will be able to handle whatever comes our way because we always have. What we can not handle we will have to ask for help with. What a great lesson that is. Asking for help is hard for me but I think it’s good to do hard things. We have Steven’s parents coming to help with the kids the week of surgery. Leaving them behind is always sad but also very necessary (for me at least because I like to focus on Nick 100% when he is in the hospital). After that we will have a lot to figure out in terms of logistics.
Charlotte will turn 10 in the midst of this and I don’t want surgery to over shadow her birthday. Steven and I will celebrate our 12th anniversary the night before surgery with Nick. We’ll go out to dinner and make the most of it, like we always do. Life doesn’t stop for lengthening.
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.
No Fibula No Problem 