“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.

 

Lengthening Number Four is Fin(ished)

So maybe this song deserves a full life spread but this video is this lengthening only. It’s not perfect but it made me happy to make it and share it here. I heard this particular song for the first time a few months ago and since I didn’t have a theme song for this lengthening… well now I do. I am so amazed that Nick is full weight bearing already. I knew it was possible but wasn’t counting on it.

The look on Nicks face when Dr. Standard told him was pure joy. A few months ago a mom in the support group wrote about how amazing it is to get to watch your child take their first steps more than once. As moms of kids with fibular hemimelia we may witness pre-surgery first steps, then in fixator first steps, then post surgery first steps and possibly many more. We may not get that milestone “on time” but we may get it 10x over! That joy adds up!! My heart is overflowing. I feel privileged to mother this boy and travel this journey with him.

I’ll post more details about todays RIAO visit another time. It was great!

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!

Nearing the finish line…

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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!

School News

We have decided not to send Nicholas back to school till the distraction aka lengthening phase of this surgery is done. He’s about 1/2 way there! It’s just too complicated and he just does not feel ready. He is having random spasms. He’s not comfortable sitting for long periods. He is making some great progress with his knee bending and we need to keep working on that. He’s lengthening 4x per day which would be hard to work into the school day. That’s about it. I think it’s reason enough.

The Fibular Hemimelia and Limb Lengthening Awareness Group members helped me think this through. One mom pointed out that it still the same process even though it is not an external fixator. It really is a big deal to grow 2 inches in six weeks. I also feel like he really needs to have a say in this. Pushing him at this point would not benefit him enough for me to feel it would be worth it.

So that’s that. I will be working on getting Nick out more. He is doing much better with stairs on his crutches thanks to some weekend practice. He’s still feeling really happy about his middle school acceptance. I just want to makes sure he’s doing what he needs to, to feel ready come August! At home instruction should be calling me today.

Quick Update

As I posted previously, on Monday Nicholas began doing 4 lengthenings per day. First of all Nick really is doing it all on his own. I just pass him the remote which he calls the .25 2.0. The new remote is so easy for me to lift one handed (which I have another week of doing as my arm recovers from surgery). It actually seems faster than the old remote but I am not sure if that is true.

Also Nick has not had pain meds in days. I thought he would have more pain doing more lengthening but so far so good. It’s not that he’s been totally pain free but it’s been manageable. PT is hard! His knee does not want to bend much but I think we are making progress and I know we are not sliding back so it’s ok, whatever it is.

Stairs are really not working for him right now. He walks great with the crutches but stairs are rough which means we are pretty much home bound when Steven is not home. Thats getting harder to handle. I really want to try to get him out more!

So while lengthening is going great losing Monk has been hard. I have this terrible ache in my chest that I did not expect. Not at all. I know so many people have lost pets and know what its like. More and more I feel like we really were one big pack and he was an integral part.  Such a peaceful presence and he was our little watch dog. Seriously, though he was small he was always watching. His absence is just painful. There is no way around it.

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2 Weeks Post-Op-Update

Writing less these days. Things seem to be moving along and progressing as they should. After my last post Nick started to turn a corner. While I was out on Saturday (doing an interview for a school project that was totally amazing and reminded me why I love school despite how hard it is right now) Nicholas decided to try getting up on his own and now he can. His leg is still weak but he moves it with his arm and he is not trapped in bed waiting for someone to help him out anymore. That is huge morale wise.

Then we got a visit from a wonderful gal named Eden and her family. Eden has a precice in her femur just like Nick but is ahead of Nick. In fact she finished the lengthening portion of her surgery this week! #edenstrong!!! Her mom has been such a great support and information person for me. It makes a huge difference to be able to reach out with questions to a mom who has been there. It’s been a while since I wasn’t the mom in the know and I feel so much gratitude for this family sharing their journey with me and a deeper love of what this blog and the support group offers to others.

I loved seeing Eden and feeling like everything Nick is going through is normal and will get better. I think Nick was pretty impressed and heartened to see Eden lifting her leg on her own!!! Like a champ really! He’s been in a pretty up mood ever since. Eden also gave him this cool putty as a gift. It has had him mesmerized. It’s fun to see my screen loving boy totally into some tactile play! We all need more of that in our lives. Connecting with families on the same journey is huge! Seeing Eden get around on her crutches like a pro really gives me hope that Nick will be on the move soon, and even if it is not soon, it’s ok. I think we both feel like he will get there.

Eden’s parents also shared a cool app with me called Dosecast. Steven and I can put it on our phones and have reminders for when to lengthen and when to give pain medicine. I think I will use it for vitamin reminders too. I didn’t think I would need it for lengthening reminders till yesterday I forgot the morning lengthening. I realized by 10am so it was fine but still really surprising to me. The app will be a godsend! 20150406_130531In other news we’ve been yo-yoing with the pain medicine a bit. Nick was not needing it during the day and then the lengthening has seemed to start to hurt some. Then pt got really hard and he needed pain medicine for that. It’s pretty normal actually. Because of the eight plate Nick’s knee seems not to like bending at all but because of the lengthening extension is our focus so I am trying not to stress that. Then last night Nicholas started feeling spasms. He actually said to me “Mom I know enough medical terminology to know that I am having spasms”. So I gave him valium for that. And then he could not fall asleep so we chatted about going back to school and lots of other things.

Nick’s sleeping through the night again but I am not. Our dog is sick so I have been sleeping on the couch with him. I’ve only had a few nights in my own bed since surgery and I am realizing the couch is killing my back and not sleeping through the night is making my brain foggy. It’s great that the kids are on spring break this week so our days are pretty laid back. Although I am too distracted to get much school work done during the day. Nick is not enjoying his school work either. I am trying not to dread what’s next. In general I know that lengthening is going to get harder as Nick’s leg stretches. The pain meds are doing their job so far. I just hope this continues.

Incisions are healing well though some are annoying Nick. More normal stuff! They all look pretty good. Walking around is going well with the walker. Stairs are still hard with crutches. Appetite is still not what it was but between the pain meds and Nick being less active I think that’s pretty normal too. “Normal” one of my most hated words is getting used a whole lot in this post.

Friday I have a small surgery to excise an area where I had a new growth removed that came back abnormal (here I would totally prefer the word normal). I wish I was as brave as Nick or even a tiny percentage as brave as Nick, but the thought of getting stitches in my arm makes me anxious. Monday we go back to Baltimore for PT, a new brace for Nick and a check up. I am dying to see that this magnet is doing it’s job!!! The discomfort Nick feels is a comfort to me in that regard. It makes me feel like something is actually happening!

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I will see if Nick would like to do a lengthening video so you all can check it out. It’s pretty amazing. Although you can’t see much happening at all. It makes a noise and that’s about it.

Please send a good thought or a prayer to our friend Nathan who has fibular hemimelia too and is having surgery today! He’s getting an external fixator. It’s not an easy journey but he is a brave and strong kid with an awesome family. The are all in my heart and thoughts today! #teamnathan