Team Nicholas 3.0

Team Nicholas 3.0 is the Facebook group I created for folks to keep up with Nicholas and his up and coming surgery adventure. I call it a surgery adventure because it’s so not just a surgery. If you’re new to this blog then you likely don’t know about Taylor Spacial Frames, half pins, wires, pin sites, pin care, and all the other little bits of life in an external fixator.

Limb Lengthening and Reconstruction for Right-Leg Fibular Hemimelia 3.0

This will be Nicholas’s 3rd lengthening and most likely entail about 6 months in the fixator. We thought when he was a baby that he would only need three but we didn’t know when he was a baby that he could be over 6’3. That growing like a weed cliche was made for Nicholas. So this will be the third of four lengthenings. And he’ll still have ankle reconstruction after this. As is probably the norm, treatment for a serious limb deformity is not necessarily a straight path.

If you’ve been reading the last month or so then you know how worried we’ve been about Nicholas’s ankle. The good news is Dr. Standard explained to us much better last week what’s going on with it and some likely causes or aggravators. I had really thought Nicholas’s weight was just too much but if I am understanding things right it’s not so much his weight but the fact that he is growing so fast that problems he might not have till further down the road are popping up now.

Nicholas’s ankle needs work! Unfortunately the best surgical option Dr. Standard has, which he has performed on ankle’s like Nick’s is not an option right now. We have to wait till his growth plates close. The surgery involves making a diagonal cut in the tibia and repositioning the foot etc.

In the mean time Dr. Standard has figure out that some of the ankle shifting problems are caused by or exacerbated by the residual deformity in Nick’s tibia. It’s still somewhat bent which is causing his ankle to kick out more. Fortunately this one can be fixed with this surgery.

We had thought Nicholas would be having a femur lengthening this time as well using an internal fixator and we were very excited by the prospect of getting 10cm from one go but that’s not to be. Apparently there is a problem with the manufacturer of Dr. Standards device. This is likely for the best considering how complicated our lives are right now, having a totally new thing going on in Nick’s leg would have been extra stressful. An external fixator is the devil we know and an internal would have meant learning a whole new device with it’s own quirks and potential complications.

We didn’t end up talking to Dr.Standard without Nicholas present but I was able to ask enough of my questions to feel good about the course we are on. I truly think the other stresses in our lives were impacting my feelings about surgery. It is hard to be positive and hopeful when thinks feel like they are falling apart.

I didn’t get the dream job by the way. I lost it to an internal candidate. After a two month long process, tons of research, preparation and general hopefulness I didn’t get it! It was a very kind let down. One of those ‘it’s not you, it’s me type of things” or in this case it’s policy. But the why does not matter so much as the reality of not having the job. That job would have enabled Steven to be the at home parent. I would have been able to provide for our family. We would not have to possibly move! We’re both still looking locally but our best option might be moving and frankly I am ready to go. Unemployment is too stressful. I just want our family to be safe and together and have what we need. I will gladly (and sadly I am sure if it comes to that) move for that!

So now we move forward with surgery while we still have insurance to pay for it. None of this will be easy. I know I have to be strong for my boy because this is of course harder on him than anyone. It’s his leg after all! But as parents, along with all the usual ‘my kids having major surgery’ stresses we have the financial stress of supporting a family of six without a job between us. There will be co-pays, prescriptions, medical supplies (like the wheelchair rental), gas for the back and forth trips, cafeteria money (since Nick plans on sushi everyday and I’m all about giving Nick all the little pleasures we can) coffee money because really how else will I survive, and there’s more but my head is spinning just thinking of it.

Team Nicholas 3.0 here we go!

‎”You never know how strong you are until being strong is the only choice you have.”

That’s about as true as quotes get, at least to me. It was posted on Facebook by another Super Mom. Super Moms are moms of kids with Fibular hemimelia who have gone through the super surgeries (super hip, super knee, super ankle and yes these are technical names for surgeries and the Super Mom moniker came from the Super Doc himself: Dr. Standard). There are so many families of children with limb differences who inspire me. We’re a unique group. We have tough choices to make. Choices most parents couldn’t dream of making. If you asked me when I was pregnant if I could imagine having to choose between amputation and complicated limb reconstruction surgeries I wouldnt have been able to fathom it and yet…I did. Many parents do.

We made the choice over eight years ago to preserve Nick’s limb. Even if it would not function as well as a prosthesis in his case. I wasn’t really worried about Nick being an athlete. We felt it would be wrong to amputate a functional foot. I still feel that way but I am now questioning how functional Nick’s foot will be. For the first time since making the choice we are questioning it. More specifically Steven and I are worried about Nick’s ankle. Steven’s point is “If eight years old and eighty something pounds is too much for his ankle, how will it handle carrying 200 plus pounds into adulthood?”

When I go on web chats and chat on Facebook and even return messages from readers worried about their children’s future with FH it has never been difficult for me to be supportive and positive. I don’t doubt or regret any of the advice I have given or what I have shared. But the fact is that almost or maybe every time we’re talking about cases much less sever than Nick. Maybe with the exception of bilateral Fibular Hemimelia but that’s very different in my opinion. I wish there was a mother I could contact, who has a child with FH as sever or more so that Nick so she could tell me it will all be ok… his foot will function well even though he’ll be a great big guy… he won’t be in constant pain. I suppose Nicholas having pain not related to surgery, that is interfering with his daily life for the first time ever is really throwing us. Maybe we’ve been naive? Probably so.

I need to know that Nicholas’s ankle will last. At least long enough for there to be some advancements in medicine so he could have other options. I need to know that this next reconstruction will work. I want so much for Nicholas to be able to go longer between surgeries! This is simply not a process that is compatible with doubt. I need my faith back.

Steven and I as parents have to be strong enough to ask all of this of Dr. Standard and trust that together we can make sure Nicholas has the best possible outcome. Maybe we have to be strong enough to face the fact that for Nick there are no easy answers, no perfect solutions. Nicholas was not born with mild Fibular Hemimelia, or even moderate Fibular Hemimelia, his case is pretty sever. The outcome we need is a functional foot with a stable ankle that can handle the big guy physique Nick’s already growing into.

It’s time to make a decision we made once and have to be strong enough to make again. It’s the only choice we have.

I love Hugs From Lucie!

hugs from lucie

This link speaks for itself! Click it!

Wheelin and dealin

Oh my Nicholas, sweet, handsome, smart, savvy Nicholas. He’s totally bargaining for things and privileges for after he has surgery. I had made the mistake of telling him we would get him one pack of Pokemon cards for each day in the hospital. It’s likely only 4 days. That’s not extravagant really but if you want to donate a pack to the cause it would certainly be appreciated : )

So my offer has created this wheeling and dealing. He’s trying to work in some Beyblades. He’s thinking about videos and strategically based televisions and a private wii! In other words he’s working it. Can’t blame him. It’s a long road and he’s making the most of it like only an eight year old can.

I suppose I have my ways of making the most of it too. I had my second round of interviews for my potential new found career as a Patient and Family-Centered Care Coordinator. It’s a dream job in terms of making the most of my experience as Nick’s mom and using my experience to help others. It’s also as if my Psych degree, my volunteer experiences, my very nature has led me to this moment. But without Nick this career would not exist for me.

And then there’s the reality of going from at-home-mom to working mom. I have to admit to my own wheeling and dealing. If I do infact get this job, I get to have a long term at-home-husband. I get to be the breadwinner and he’ll be the bread maker. Ok maybe he won’t be baking bread but I wouldn’t put anything past him. He’s already started cooking more and he’s done great! He’s always been better at housework than me and I’ve always hated to admit it! Though anyone who really knows me, knows already!

There’s a lot of judgment out there for women who don’t do it all! While all the other moms complain about mounds of laundry I hide my head, not in shame but I hide nonetheless. Steven has almost always done the laundry. We’ve always shared household responsibilities. That’s just how we’ve worked out our world. Now with Nick being an over 80lb 8 year old, Steven will be the better parent to be home for this surgery adventure. He’ll get to do the Baltimore runs and have sushi at the Sinai cafeteria. The’ll get some bonding time and Nicholas will have the support he needs. Including the physical support cause he needs someone who can actually lift him!

So if I’m the working parent does that mean I have to do the laundry… Ah well any way this deal works out I win! Steven is the best dad and husband! I don’t write that enough so I’ll write it again: Steven is the best dad and husband and Nick’s going to have what he needs. No wheelin or dealin necessary.

I am scared of surgery

Nick has been having a hard time falling asleep. By 9:45 last night I finally thought to ask him if there was anything on his mind! He began to cry a little and told us that he is scared of surgery. I told him it was normal to be scared and ok to cry! Then I asked if he could tell us specifically some examples of what he is scared of so we could talk about it and try to help.

One fear was the epidural. With the last surgery he was worried about it coming out by accident. He asked what would happen if it came out by accident. I told him it wouldn’t hurt and nothing would happen since he will be on other pain meds to. This is so different than when he was five. Just him knowing what the epidural is!

Another fear was something going wrong during surgery. We both told him that in all his previous surgeries nothing has gone wrong and even if something did, Dr. Standard is there to take care of it! More specifically I said “Dr. Standard is the best, right?” Nick agreed. “I trust him to take care of you because he always has and he loves you, right?”. Then Nick said “yes and he said his kids use to like pokemon”.

I don’t think Dr. Standard has actually said I love you, but I don’t think that matters. I do believe he loves Nicholas and will take care of him and do what’s best for him. I always have some worries during surgery about anastesia (I just want to see him awake ASAP) but I don’t worry about things going wrong with Nick’s leg. I just don’t think there’s reason to and even if I did worry what would it change?

This next surgery will likely entail ankle reconstruction, tibia lengthening and femur lengthening. It is a lot! The potential 10cm makes it seem worth it. Nick’s difference is already 6cm. He’s such a big boy! He needs a lot of length to be able to go awhile without another surgery. I am wondering if after this Nick will reconsider the shortening surgery…

Now it’s time to focus on planning the logistics and helping Nick emotionally. We’re also going to have a presurgery party! I’m thinking maybe a karaoke party with family and Nicks classmates. I will do anything for my boy. I still wish I could take this all away. Even with all the goodness that has come out of it. Since that’s not possible we’ll do our best with what we have, make the most of it, make meaning and maybe even make music! Nick Curley’s karaoke night here we come!

When I grow up…

“When I grow up I will create a bone made out of metal that can grow”. That’s what my boy was telling me about at breakfast. That shows how having fibular hemimelia has not limited his life. In fact it has expanded his consciousness, and mine, and my family’s and our communities. Truly how could he possibly think of this amazing invention if he did not feel he was a bit of a bionic boy already.

Nicholas will be having his third leg lengthening and reconstruction surgery in January. We knew this was coming but it is coming a bit sooner than we expected. I’ll get to posting about the details soon but for now all you need to know is that it will be be his “biggest” surgery yet. Potentially gaining 10cm, using both internal (kinda like Nick’s idea of a bone made out of metal that can grow) and external fixators.

So far we are all going into it with as positive an attitude as is possible. Nicholas especially! He requested that his surgery not be at christmas and not be during summer break. His doctor, Shawn Standard at the Rubin Institute for Advanced Orthopedics in Baltimore (in case your new here) takes Nicholas’s emotional needs into account as much as his physical needs. Since Nicholas will likely be in an external fixator for about six months, starting in January should make his summer relatively fixator free… maybe not cast free but fixator free.

Letting Nicholas have a say in what happens to him and when, helps him to feel like he is part of a team that is working for him, not doing things to him. Without this point of view I doubt he’d be dreaming up inventions to help others with bone deformities in the future. Even if Nicholas does not create a bone made out of metal that can grow I am sure he will help others with fibular hemimelia. In fact, thanks to the Facebook Fibular Hemimelia and Limb Lengthening Awareness group and this blog, by being himself and living his life, he already has.