“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.

 

There is no good leg.

Elizabeth Gilbert recently said or wrote (I can’t remember which since I try to absorb everything she puts out in the world) that she is trying to stop being judgmental… to give up righteous indignation (not a direct quote in any way but it’s the jist).

I’ve been trying to do the same. But I am failing and this post is proof.

There is a procedure called an epiphysiodesis which basically is used to stop the growth of the longer leg in kids who have fibular hemimelia (it’s also used for other conditions). From what I learned at RIAO ages ago it’s safe, reliable and a great option to have. The International Center for Limb Lengthening describes it as a “small, minimally invasive, uncomplicated procedure”. It’s outpatient and for some kids it can eliminate an entire many months long lengthening.

In Nick’s case, so far, he is still refusing it. He wants to be whatever height he is meant to be. We want to honor the choices he makes about his body.

If it were me, I’d be all over this option. I would not hesitate. Not for a second. If Nick were willing, I wonder if it would have happened already. The timing of the procedure is very important. You can use the multiplier app to figure it out.

The thing that upsets me is that some parents wont consider if for their child because they “don’t want to mess with the good leg”. Calling the longer leg, without fh, “the good leg” in and of itself feels wrong to me. For one leg to be good by default it means the other is bad. I can imagine how Nicholas might feel if we had referred to one leg as good. His leg with fibular hemimelia has been through a lot, I’d argue it has worked harder than his leg without fibular hemimelia ever will. That’s a good leg in my mind.

Like anyone else’s legs, I think the simplest way to label the legs of kids who have fibular hemimelia is “right” or “left”.

And the aversion to doing a surgery on one leg in order to eliminate multiple surgeries on the other is poor logic, in my opinion.  Although I do understand the fear that drives such a belief. It’s also really not my business what choices anyone else makes for their child. I just happen to read a whole lot about it in the support group and sometimes share my views if opinions are requested.

Maybe the labels good and bad seem pretty benign to you. Maybe I overthink these things… I don’t know. I’ve seen other things this week which I judged pretty harshly. Such as a parent sharing a photo of a baby in a fixator calling it the “ugly truth” of fibular hemimelia treatment. It seems to me that this parent is trying to illustrate that fh treatment will not be an easy road. However I think the choice of words is frankly ugly and inaccurate. My sons leg grew 17 centimeters with the help of three taylor spacial frames. There is nothing ugly about that. It wasn’t always an easy journey but it needs no dramatizing and the last thing I would ever call it is ugly. Some of his fixator pics are so darn cute!

Nicholas' baby fixator (taylor spacial frame about a month after surgery March 2005
Nicholas’ baby fixator (taylor spacial frame about a month after surgery March 2005

I have been keenly aware from the start of this process that as his mom, Nick wold take his cue from me at the start (we reverse places pretty often on that one these days). Nick does not feel like a victim of fibular hemimelia. Yes we are still figuring out his foot pain but he’s living his life just fine in the mean time. He had some foot pain on Sunday after a lot of activity but both feet hurt… mine did too. There are no good feet or bad feet.

We’re pretty lucky to have feet. Whether two toed, or five, braced or free, carbon fiber or flesh… we are fortunate. Don’t judge a foot by it’s fixator…  or a leg by it’s scars… or a parent for their fear… or a mom for her judgy post on judgment… try not to. I’ll keep trying too. It doesn’t get any more good than that.

 

Friday the 13th

This Friday, the 13th of December, Nicholas will have his 13th surgery. Dr. Standard will remove his current eight plate. It’s outpatient and should be short and sweet. Or as sweet as any surgery can be.

Nick and I are going alone, as we have done many, many times in the past. I worry as he gets older (what I really mean is BIGGER) about going it alone. I can’t even come close to carrying him now. I will just pray we do not need to make any stops on the way home.

Some might suggest Steven take him instead of me but I can’t consider that as an option. I have always been there for surgery. Always taken him into the operating room and helped him go under. It might sound selfish but I know that its also important to Nick to do things as we always have.

The only thing that is really upsetting Nick about this surgery is that there is a basketball program starting at school and he will miss most of it. I don’t think he’ll be running and jumping for a few weeks.

So today begins a crazy week for our family. Today Nick has a party to go to, tomorrow his pre op physical, other family appointments like the dentist and orthodontist, 4 meetings for me in the evenings (including my first as part of the Parent Advisory Council at AI DuPont), an after school excursion to hunt for candy canes at a potato chip factory (and see Santa!), prepping a community dinner for 80+ people (which is Saturday night and my mom’s sauce is the centerpiece), Nicks first concert as part of the school chorus, and of course actual surgery Friday!

This past Thursday Nick and I participated in a web chat with Dr. Standard. Nick offered to answer questions. He didn’t take many but he really enjoyed it. I am always impressed with his knowledge and outlook. He even came up with a new slogan, “Motionless Feet Unite”, for folks with fused ankles like his.

My boy is just living his life and doing what he wants. He knows that not everyone can do that. Each surgery moves Nicholas closer to the light at the end of the tunnel. Although, in many ways, he has always been there. He’s almost always been active and happy. If that’s not the light, I don’t know what is.

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“Mom, lets go talk about my surgery fears.”

Thats what Nick and I just did. We sat in my bed and I asked him what his fears were. He said the surgery itself and cause he wakes up with surgeons he does not recognize. He asked to see Dr. Standard after surgery this time but I am pretty sure Dr. S goes from operating room to operating room and cant exactly sit by Nick and wait for him to wake up ; ) Thats my job.

So without being able to take this fear away I asked Nick what he thinks we could do to help with fear and he said “think of ways to make the most of it!“. We came up with 10!

  • We get to be together.
  • Video games at the hospital!
  • Getting to eat and drink whatever we want. (He has no idea that there are drinks I would want that I cant actually have at the hospital).
  • The awesome hospital rooms. Spacious! Massive TV! Giant sleep chair for moms!
  • Hackerman Patz!! Getting to stay across the street from Sinai the night before surgery is awesome and Nick loves it there.
  • The snack vending machine at Hackerman Patz.
  • Video games at Hackerman Patz.
  • Getting to sleep as much as we want in the hospital (he has no idea that this is not at all true).
  • Getting to play Minecraft with Charlotte even though we will be far away.
  • Having his new kindle fire to use at the hospital and the hospitals wireless internet. I’ve been grateful for that one for a long time myself.

So that’s todays list. By the end of the list making Nicholas was tickling me and laughing and smiling and I was reminded of how insanely lucky I am to be the mother of this most amazing boy!!!!

Tequila of the Month Club

Nick is proud the scars left behind after 11 surgeries!
Nick is proud the scars left behind after 11 surgeries!

There are Tequila of the Month Club’s. Maybe you knew. I didn’t. A few weeks ago when I was telling a friend about Nick’s knee troubles she said something like “Girl you need a tequila of the month club”. The freaking stress! She’s a good enough friend to understand it and probably see it on my face. Yes it was great news that Nick’s ligament was ok but knowing another surgery was coming was also a bit of a WTF moment. I am just being honest.

So I have found myself, chuckling to myself, thinking of a tequila of the month club. I don’t know why I find this thought so amusing. But today I stopped laughing because it really felt like a good day to sign up.

One tequila,

My boy has had fours surgeries this year already and more drama than any nine year old boy needs. And it continues. Yesterday or the day before his leg began to hurt when weight bearing. Then he was having a burning feeling (occasionally) in the area where it hurt. This all happened to be happening in a deep tract of half pin scars. Sometimes his leg just felt weird when he walked and sometimes he was, and is still, wincing in pain.

Two tequila, 

Nick thought it was the old pin sites and it likely is. After posting about it on Fibular Hemimelia and Limb Lengthening Awareness it seemed that the logical explanation was adhesions from the scar tissue. We figured this out thanks to a handful of folks posting about it and sharing pics and stories. I love love love that group! Still the realization came that this would require a surgical fix. Yes it’s fixable but it’s a surgical fix. In less severe cases massage and such can help. Maybe if I’d been massaging and such all along it wouldn’t be this bad.

Three tequila,

Talking to Allison from the RIAO today confirmed our Facebook assisted diagnosis. Let me point out here that google was little help with this one. I pride myself on being a pretty good google doctor. I have diagnosed all kind of things but this was tricky. Allison did say massage helps sometimes but she remembered that Nicholas does have some significant adhesions and she didn’t think it would really help much but it wouldn’t hurt to try. She suggested ice and heat as well (possibly alternating) and I asked if I could give him ibuprofen which of course I can. Nick is so resistant to pain medications of all kinds. Anyway I asked if this could be taken care of with the knee surgery (eight plate part two) thats coming and she said yes. She will talk to Dr. Standard about it and I think we are scheduling it for early January. Nick has a clinic appointment on a Thursday so surgery can be the next day.

Floor.

So now I am sad and tired. I know there are so many much harder things and I know we are so lucky to have the RIAO and Dr. Standard, and access to excellent care in general, and for Nick to have had so many successful surgeries, and supportive family and friends, and a healthy family in general but… SURGERY SUCKS. Telling my kid he would be having surgery in a month super sucks! He was of course upset. Nick had wanted to put off the knee business as long as possible and when I had previously suggested a preemptive plan for January he had resisted. And yet by the end of our conversation he was asking if he could please stay at Sinai over night. We do a good job looking on the bright side and Sinai sleepovers actually have been pretty fun in their own way. And I know he’d love to get back to the playroom!

I don’t know if I have written about this before but I have had this crazy fear that me sharing all this about Nicholas would end up reading like a cautionary tale. He’s had so many surgeries. Every time a fh parent asks me how many I feel like they are thinking they don’t want this for their kid. Heck I don’t want this for their kid or my kid! But number of surgeries and even the unfortunate reality that they seem to be getting closer together does not mean Nick’s not actually doing well. 17 cm’s of new bone and mostly stable joints is no small thing. Complications happen. Extra surgeries happen and life keeps happening all the while.

A few weeks ago Nick was running and playing and pretty “normal”…. icky word but I can’t avoid it. He really was just being a kid with two legs of almost the same length, living his life. Kinda dreamy actually! I know he will get there again and hopefully have that few year gap before additional surgeries that we’ve been counting on but there’s no way to know what will be.

Emotionally today felt like a floor kind of day. Still I perk up for the kids as much as I can and hug and comfort Nick but today I had to peel my heart off the floor to do so. And sadly tequila will not be the reason I need to be peeled off the floor in the future because in the sate of Delaware you cant do the mail order alcohol thing! That sucks too.

Anyway thanks George Carlin for “One tequila, two tequila, three tequila, floor.” I didn’t know that one was his till I googled it. At least google is still good for something!

Teeter Totter Knee or Dynamic Valgus

For the last few weeks Nicholas has had a bit of knee trouble. It started with popping and clicking and sometimes it didn’t want to unbend. This happened a lot for about a week and then has been intermittent since. I was going to take him for an xray closer to home but Thursday I was helping out at the RIAO web chat and I figured I’d ask Dr. Standard about it. My instinct was that he would want to see him. Nick’s knee is unique, which I guess you could say for a lot of FH kids, but Dr. Standard knows it inside and out ; )

I was right and we went to Baltimore yesterday. I was worried that the problem was the ligament Dr. Standard put in in June of 2011. Dr. Standard had the same worries but it turns that is ok. Nick has a teeter totter knee or what’s known as dynamic valgus and he’ll need an eight plate put in to correct it. This was a relief compared to the problem being the ligament so it was good news in a way but then again your kid needing surgery is never actually good news. Yes I am grateful it is smaller, yes I am so grateful it is fixable and yet today I am kind of down about it. It’s actually 2 more surgeries.

Nick was relieved to hear eight plate. He wiped his brow in an expression of relief when he heard it was a small surgery and not happening right now. Can you imagine a kid reacting that way. My boy is really amazing and I know when the time comes he will likely take it in stride but after all he went though in the last year I will pay close attention to his emotions and reactions. It is a lot for a little (or not so little) boy to go through.

So surgery will likely happen by spring and it will have to be sooner if it starts to hurt him. Right now he’s saying it does not hurt but nearly trips him and is annoying. We might opt for January to get it over with in winter. Plus he will likely have the 7 screw plate in his tibia removed when the 8 plate is put in and that will mean weeks of downtime too. Honestly I am glad the plate will be removed. I know it was ok to be there but it is a potential problem in my mind and if it’s not needed I’d rather it be gone.

Teeter Totter Knee

Yesterday was also Christopher’s 5th birthday. We made it a great day despite spending it on Nick’s knee mostly. Chris was excited to get to have lunch in the cafeteria and cake by the water fountain in the atrium in the lobby. I also took them to build a bear at the hospital. It was fun to watch the kids choose their animals and just be happy. Because we bought four I was able to buy $50 in gift cards for $25. Nick asked what we would do with it and I said we’d talk to Marilyn about giving it to kids who will be in Baltimore for the holidays for surgery. When we were in the parking lot he saw a kid in a fixator and he wanted to run after the boy and give him the gift cards. I probably should have let him but we were just getting into the car and with all four kids and Nick would have really had to run to catch up to him.

Going to the RIAO with the four kids myself was not a hard as it could have been. Thankfully we were put in a room pretty quick. It kind of turned into insanity after that. Playing cards strewn across the room, paper from the exam table ripped and thrown, singing, dancing, yelling and general excitement. A doctor who was not working with Dr. Standard peeked in and I said “I bet you’re glad you’re not coming in here”. He just stared and ultimately I think he was entranced with Elizabeth’s singing and dancing (2 year olds are quite entertaining at least to me). As soon as she saw him watching she stopped but it was really a fun moment. When Dr. Standard came in he wasn’t phased by the chaos.

Nick also does not need a shoe lift. His difference is a little more than a centimeter or maybe it was a centimeter and a half. We found that out at the end of the visit so my brain was fried by then. I thought it meant that Nick finally slowed down growing but Dr. Standard said his leg might just be keeping up better at the moment. Sometimes the lengthening stimulates growth and hopefully thats what happening. No lift is a pretty big deal! And makes a nice happy ending to this post.

8 plate summer update

I cant believe it has been so long since I have posted but life has been busy here. Baby number 4 is keeping me busy! Nicholas has been doing great! In fact tonight he is at a baseball clinic learning how to play with former pro athletes and having a great time! This summer he has started jumping off the diving board at our local pool and going down the water slide and loving every second of it. All we have to do is get to Hershey Park and go on our Glen Brook vacation and summer will be complete!

We also got great news yesterday in Baltimore! Dr. Standard said that Nick’s super knee surgery can wait another year or so and as you can see from the xrays his 8 plate is doing it’s job quite well!  When Dr. S asked him how his foot and ankle were feeling Nicholas said “great, fantastic”.  I cant think of anything better to write than that!