“Cant Stop Wont Stop Keeping My Foot”

“Can’t stop wont stop keeping my foot” and “Can’t stop wont stop growing”.  Those are Nick’s quotes on our way out of Sinai on Thursday after learning his predicted height jumped to 6’6″ and Dr. Standard’s plan for his foot.

For a kid who also learned he would be having surgery Nicholas left pretty happy. I think a lot of his happy was about his foot. I didn’t feel particularly confident in Nick’s foot even though the new insert has helped, he’s actually still had a fair amount of pain and knowing he’s going to be an even bigger guy than we thought just didn’t inspire confidence on my part.

I have to say I did feel differently after hearing Dr. Standards plan which is basically a whole lot of arthrodesis or fusing. It made sense to me when Dr. Standard said it all and I wish I could remember in more detail but I remember he and Nicholas were talking about doing a triple and I think that referenced fusing it in three places.

This surgery will actually have 5 potential separate events going on.

  1. Take out Precice rod.
  2. Put an 8 plate in his femur and adjust the 8 plate currently in his tibia.
  3. Epiphysiodesis on his left femur… the boy has agreed to be shortened some!
  4. Check out his knee and try to figure out what is causing the popping and clicking and pain. If he needs a new ligament he will not do the foot surgery this time. OR if his knee can be put off he will do the foot surgery because Nick feels this is the priority.
  5. Arthrodesis as described above.

Wow. That is a lot isn’t it? Still it’s not all big stuff and Nick wants it done now. The timing of the epiphysiodesis is vital so I don’t think we can wait on that. The precice rod is ready to come out. Nicks still having issues with knock knee so he needs the additional 8 plate. His current 8 plate is bothering him so it needs to be looked at and the general knee and ankle pain are the things Nick most wants addressed.

The good new though is that Nick might not need any more leg lengthening! He might just end up with a 2-3 cm difference and since he has to wear his brace and insert most of the time already that could easily make up the difference. Dr. Standard said we can wait and see and not plan to lengthen again till he is done growing anyway.

On our way to Nicks appointment we used the notes app on my phone to write out questions and then when we got to into a room at RIAO Nick wrote them down on the examining table paper so we would not forget. My plan was to really help him take the lead question wise even if some questions were mine. I don’t know how good I was at letting him lead but it felt like a great visit communication wise.

My most pressing question was his current heigh prediction and current predicted difference at maturity. Right now his discrepancy prediction is 5.8cm. It’s interesting that his height prediction jumped quite a bit but his difference did not. We think it means his right leg has been growing really well post lengthening. Sometimes lengthening can stimulate growth.

My boy is a great grower all around. I’d even say he’s an expert grower. Below you can see our hands traced on top of each other as closely as we could. Even though it’s a little off you can see Nick’s hands are a good deal bigger than mine.

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We did other drawing as well. Nick’s really into architecture and design although he still plans to be a chef and restauranteur. I love hearing him talk about his various interests and dreams. He’s currently doing a Young Actors Workshop in our community  for his second time and we planned surgery around his performance.

We also planned surgery for my spring break from school. I am much more concerned about Nick’s academics this year compared to last year so I have written to the person in our school district who handles 504 plans and have requested one for Nicholas. If I don’t receive a reply in a day or so I will call. I am not stopping till he has one. We only have two months to get things in order and of course there are a lot of logistics to figure out but I know we can do it.

While we were waiting at RIAO a young gal came over to ask Nick about the Precice and what it was like. He said the worst part of surgery was these supplements:

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Sorry to the parents whose kids will start taking these soon! I don’t mean to be a bummer!!!! 

It was kind of funny that he had this big surgery and months long process of leg lengthening and this was the worst of it. To be fair one of the 3 daily pills was like the worst big vitamin you can imagine. Drinking a can of seltzer to take them helped but apparently they made a lasting impression.  I am sure they helped with his amazing bone formation and who knows maybe they contributed to his “can’t stop wont stop growing” overall.

 

Lucky 22 Centimeters

On our way out of Sinai on Monday Nick was pretty happy. We had just learned from Dr. Standard that the lengthening portion of this surgery is done. I had expected it to be. I had marked May18th as the last day in our lengthening register. Doing 4, .25 mm lengthenings per day made it pretty easy to calculate but it could not be official without an x-ray and the ok of Dr.Standard. 5cm of lengthening achieved with the PRECICE. There it is.

A filtered picture of Nicks leg to help hi-light where the new bone is filling in.
A filtered picture of Nicks leg to help hi-light where the new bone is filling in.

Back to leaving on Monday, while expressing his joy Nicholas said “Mom these people are miracle workers. I want to make sure that these things don’t get forgotten and there are people to keep them going”. So I asked if he wanted to be a doctor or a physical therapist so he could make sure they continue but I could tell by the look on his face it’s not an option (and I know he wants to be a chef), so I reminded him that there was a fellow in the room today, as always, because they are always teaching others so these techniques can continue and spread further. Nicholas said that was a huge relief. He cares about the future and other kids having access to what he has had. He feels lucky. That’s the magic I could not have imagined when he was a newborn but my child is lucky.

Nicholas has gained 22 centimeters through leg lengthening (so far). 22 is my lucky number but I think it’s lucky enough to be shared. For along time I thought Nick only needed 20cm’s but predictions change. Not usually quite so much though!

I could not have imagined almost 12 years ago that he would have come this far by this time. Nick’s legs are pretty much even now (again)! This journey has not been what I expected in almost any way. I thought I would have to work so hard to help Nicholas feel good about himself because of this big limb difference. I thought I had to make everything ok. I thought wrong.

He’s always been ok. He has always been his own sparkling self. That was always my biggest fear, not what would become of his leg but what would become of his heart. How would he feel about himself. Now I know he is ok, no matter what happens to his leg.

So many fibular hemimelia families are at the beginning of the journey, wondering what will be, trying to make the right choices. I’ve often said you just have to make the choice and then make it right. Making it right means finding the best possible doctor and team to live that choice out with your family. No one else can make that choice for you. I don’t know how Nicholas could have come this far without the ICLL team and I am grateful to all of them but it’s Dr. Standard that has me in awe still. It’s Dr. Standard who can ease my fears like no one else. He knows my kids leg inside out and he knows fibular hemimelia inside out. That’s everything. I said thank you on Monday but it never feels like enough.

So what can we do with our gratitude? We can fundraise for Save-A-Limb! Want to help click here! If this blog has helped you or inspired you, please give. If you have ever felt inspired by Nicholas, please give. If you want to help others walk, give! We joined an awesome team this year with our friends from Mexico. I can’t wait to them on October 10th!! Its the 10 year anniversary of Save-A-Limb and we are so exited. Nick will be riding! Please consider joining us for what will be an amazing day. You can give or register here. Please also consider sharing and encouraging others to give. Save-A_Limb has helped Nick get what he has needed. We will be forever grateful. Nicholas has had the best care in the world and for that we feel so lucky!

1.5 CM!!!! Three Weeks Post Op Update

2015041395134945There it is!I It truly amazes me. The PRECICE rod looks massive in Nick’s femur. This is the first I have seen of it. Steven told Chris he was not allowed to come home without evidence so he took a photo and sent it to Steven who finally sent it to me. I have been waiting all day for this. Thank you Chris!!!!

Overall things are going well. We can continue to do pt on our own but Nick has to start bending more. He is at 43 degrees and if he gets under 40, and remains there, lengthening will have to stop. We are actually moving to 4x per day lengthening instead of 3 though I have to wonder if that might not be prudent considering this knee business. Since I was not at the appointment I don’t know if my logic makes sense. I have to talk to Steven about it when he comes home. 4x per day would mean Nick will be done lengthening in 33 days. That would be amazing but I don’t want to push and make things harder for him. I just want him to get his 5cm safely and with as little pain as possible.

Nick was supposed to get a new brace that would help with extension but since extending is perfectly fine we are holding off on that but they are bringing home the new version of the magnet! I think it will be easier for me to lift with one hand.

That’s about all I know. I am so relieved to see that amazing space where new bone is growing. I hope Nick was happy too. 1.5cm down 3.5cm to go.

Rolling Along

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There he goes. Literally rolling along. While Nick is self propelling I am pulling around the large case that contains his remote for lengthening. Calling it a remote makes it sound small. It is not.

Today we started lengthening. Although Nick did get a few mm’s during surgery this is the official start from our end. Nurse Lee delivered the device (which ended up being the old version and not the new… long story) and helped with the first go. I have a really cute photos of the moment but since Nick is in his boxers I wont be sharing it here. Nurse Lee is really one of unsung hero’s of the last decade of our lives. Seriously. I have written about her before but not enough. She has been there for all of Nick’s lengthening’s. In general she teaches parents how to care for their kids in an external fixator and lengthen their limbs. Now also teaches parents how to use a big magnet to lengthen limbs. It’s no small thing to train us to take our kids home and do these things to them. Plus she runs the web chats which have helped families in immeasurable ways.

Nurse Lee is a person I have counted on probably more than should and certainly beyond her job description. I respect and admire her so much! Now back to Nick…. sort of…

Today was doctor appreciation day but we did not actually see the doctor. We saw Chris the PA. With Nick’s third lengthening and monster fixator I was not ok with him not seeing Dr. Standard and frankly neither was he (triple negative… shut up grammar police). It seems we have both grown a lot since then. Today’s appointment with Chris went great. He answered all of our questions and concerns. Right away I asked him about the swelling in Nick’s knee which he said was ok. Nick’s other incisions all looked good. We laughed a little and really had a standard appointment… even without Standard 😉

Our clinic visits will be a crazy lot shorter if we see Chris or Allison. As long as Nick does not ask for Dr. Standard I have decided that I will not. I trust Chris and Allison with Nick’s care. We love seeing Dr. Standard but if things are going smoothly we don’t need to see him. I have talked to another family that does their appointments this way. Nicholas used to ask for Dr. Standard as soon as we walked off the elevator at the RIAO. Times are changing.

So all in all it was a good day in Baltimore. The valet service was a godsend, as it has been in the past. The gentleman who helped us today has been there as long as we have been using the service, which was a comfort. Little details can really make the day easier. Nicks physical therapy evaluation went well. His eight plate is going to make the knee bending harder but it’s really ok. Extending is the focus now and we will keep working on the bending. Since pin care was usually my job and pt was Stevens I might take on some PT. Femoral lengthening requires more work so I think it makes sense to take some on, if Nick will let me. He’s pretty particular about who does what. He jokes that I am out of job without pin sites. Imagine that.

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“I feel like a million bucks”

That’s the update. Nicholas actually said that. We are relaxing in his room now. Surgery went great! Dr. Standard updated us when his part was done. That’s the moment I exhale! That and then the moment we get to go back to Nick in recovery. When we did he was very sleepy and peaceful. That’s pretty much ideal!

Nick’s femur has already been lengthened 2mm since the device needs to be tested after it is inserted. Dr. Standard said he used a wider rod, which will be stronger than the rod he had planned to use because Nick is such a big guy.

He has a nerve block this time instead of an epidural, which he really wanted because it means he does not have a foley and there is not a massive amount of tape up his back! In fact there is no tape on his back. He currently can not feel his leg so we know it’s still working great. He has a pump ready with pain meds as soon as he needs it. His dressings are clean so he’s not draining. All in all he’s great (knocking on fake wood).

Steven and I had a relatively easy time waiting. We got to chat with Marilyn for a while which I always enjoy. Her presence gives me peace and conversation with her is always easy and interesting. We are so at home in this place and so surrounded by kindness and good energy. From the nurses to transport, it’s all been so positive. Nick had great support this morning getting an iv while awake. It wasn’t easy but he was able to laugh through some of it, and it was one stick only. Truly he had a pro caring for him!!!

Waiting for him to go into surgery was hard as Steven and I didn’t eat or drink either. That was a mistake. Waiting for him to come out was not nearly has hard as it has been at times. His nurse kept in touch by phone. The communication helps so much.

So now it’s tv time and soon movie time. Nick’s got two sushi options for when he is ready. There is a Subway which is open 24 hours. It’s great to have an option for late night hunger.

That’s about it. Maybe Nicholas will want to make a video soon. I am waiting for him to ask to. I don’t want him to feel like he has to. I told him I would post an update so everyone knows how well he is doing!