9 Seconds

This morning at Hanger Nick and I were feeling pretty cheerful. He was still sore from the previous days miracle work but he was ready for more and he was excited to receive the knee portion of his ExoSym.

By the end of the morning he did this:

And I think it speaks for itself. It wasn’t easy. He’s feeling sore but he’s aware of the difference between soreness and pain. He’s found the sweet spot as he calls for using the ExoSym effectively when stepping.

I really want to thank every person at Hanger for making this possible. I love that Nick gets to work out in a gym with others with the device. I am in awe of everyone there and in awe of the brace itself. It is, in the words of Beth, exosymply amazing!!

 

Mission Possible

I owe you all an update on Nicholas and our ExoSym mission. The paper work has been submitted. His case manager from our insurance company now check’s in with me weekly to see if there is any progress. This week she said:

“Please don’t stop reaching out to me. You don’t have to fight for this. I will do that for you.”

Did I mention her name is Jen? Jen’s are fucking awesome.

These are words I never ever expected to hear from our insurance company. Really, you will fight to get your company to pay for this expensive brace for my son? Thank you. God bless you. You are my new BFF. Sorry old BFF’s. Jen at Cigna is a my girl now. Sorry Steven I am leaving you for Jen from Cigna. She hasn’t actually done anything yet but I love her because she is on our side.

Speaking of women on our side.  I took Nicholas to a new doctor about a week ago although this doctor is not new to us. I have known, respected and admired her for years. Her name is Dr. Reid Nichols and she is at AI duPont… basically in our back yard! She’s treated complex limb deformities for years including fibular hemimelia and at least one of her patients is part of our FH family. She’s brilliant and thinks outside the box. She will do whatever it takes. She treats all kinds of conditions so I feel like she has a really broad knowledge base as well. She is a kick ass doctor.

While we were at AI we also had Nick’s brace adjusted and met with an amazing gal from PT and who made some suggestions for the brace adjustment that blew me away. Dr. Nichols also had real time solutions for some of Nick’s issues. A small thing from the pharmacy for toe pain. Kinesio tape for his knee. The whole AI experience was awesome. To be fair I know AI. I am on the Family Advisory Council and spent some time as the parent rep on the Ethics Committee. I already loved the place and I felt totally confident in Dr. Nichols and I believe Nick did too.

I can not wait to get my boy to Washington to Hanger! I am so grateful to Dr. Nichols for being on our team. She always has been really but now she is in the trenches with us! She has actually met someone who has the ExoSym and connected with the creator of the brace. She is going to apply her whatever it takes motto to my kids situation and in turn I will do whatever it takes to make sure this brace gets to more kids who need it. My mission does not end with my son, though it surely beings there and is my current focus and forever first focus!

This mission is possible. This brace finally feels within reach for Nicholas. Hopefully my next update will include a date for our trip to Hanger.

 

Faith Sans Fibula

Lately I have had some moments of fear and frustration trying to figure out how to get Nicholas this life changing brace that requires not one but two trips to Washington and still has uncertainty about whether insurance will pay for it. However I decided he would have it no matter what.  

Thirteen years ago when Steven and I were trying to decide if he should keep his leg, I took finances off the table as a decision making factor. We would make it work. I was not going to let money decide if my son could keep his leg or not. I don’t know if that sounds foolish or immature… maybe it was a matter of faith. I knew we could work that part out. I didn’t know if Sinai would be covered by insurance. I didn’t know if we would have to spend months in Baltimore, like so very many families do. I didn’t know what any of it would be like really. 

What I did know is that I could not decide to amputate my sons limb if it was functional. I am surely more open minded on that front now and I do think amputation can be the best option for many kids. Its not just a last resort. But in Nick’s case, for 12 years his leg certainly functioned as needed. Then last fall he had to start using crutches to walk because of pain and the words symes (amputation) came out of his docs mouth somewhat causally when discussing options. To be clear he didn’t think Nick was there yet and he presented other options but for me there really has been no going back from that moment.

It has made me question the viability of Nick’s foot like never before. Dr. Standard came up with a surgical plan which had about 5 parts and most of that any reader of this blog knows. Nick needed that surgery for various reasons and it was a success except for the fact that he still has pain in his foot (and knee at times). Pain that keeps him from being active. Pain that even happened when he was swimming. He was supposed to be free this summer and it has been anything but.

So again I questioned the viability of Nick’s foot. I refuse to give my son pain medication so he can be active. So he has spent a lot of this summer, way more than I would have liked off his feet and it made me think about the option we did not choose more than ever before. I still think it’s crazy that we even had to make that choice. I don’t regret the choice we made for our beautiful baby but his case of fibular hemimelia is not mild. His foot deformity was not solved with the first super ankle or subsequent corrections. He has had more than double the number of surgeries we were told he would need. That number means nothing to Nick and he has said so. Nick said he would gladly have surgery every few years to keep his foot functional. For him avoiding surgery is not part of the decision… speaking of decisions…

There is a huge difference between today and thirteen years ago. Today the choice is not mine and Stevens. Today the choice belongs to Nicholas. He wants to keep his foot. I have to make that happen. Thats what moms do.

The Exo SYM is where I have placed my hope. Since it has worked so ridiculously well for others I believe my faith is well placed. I can’t do it alone and I wont have to. As stressful as trying to figure it all out has been I have faith. Just like 13 years ago I knew if we made the choice we felt was right the rest would work out. Money will not, and will never decide if my son keeps his leg.

And so as the universe seems to provide what’s needed (or God or love or whatever you like to call the force that so many of us feel in our lives) I have had friends near and far reach out….

“Start a funding page and I’m in.”

“I might be able to help you.”

“I might have friend who can help you.”

“If I can help let me know.”

“I too will help.”

“I have a relative who may be able to help.”

“Go fund me. There are tons of us who would like to see Nick not in pain.”

“Benefit Concert?”

“I have your back.”

“Nick will have what he needs, I promise.”

Do you know what this does to fear and frustration? It neutralizes it. Whether or not these offers are needed, though I feel fairly certain they are. Whether or not they materialize for whatever reason they all create this avalanche of of kindness I feel washing over us. They remind me that as hard as it can seem and as dark as the world itself can get in moments (my Facebook friends know I have had some lately thanks to a political rant I shared), I know, know, know, know, know that Kindness is Everything, that Love Wins that we will make this happen for Nicholas. We have so much love and support behind us and beside us and holding us up. This is why my moments of frustration are moments! Just moments.

Our faith requires no fibula.

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

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.

 

Our Best Days

Nicholas did not trick or treat last night. Nicholas did not dress up. But Nicholas did walk our dog and that made me pretty happy. I was happy that he could. Walking sans crutches is still feeling fabulous and looking fabulous (to me, Nick is having some leg pain which we assume is from not bearing weight for about 5 weeks).

Trick or treating was rough last year. He was waiting for a new shoe insert and brace (I think that was why he was in pain). Fall seems to be a rough season for his foot (which some theories are brewing on for another post). This year he just didn’t want to. At first I was upset and tried hard to encourage him but then I quit because I realized he really just didn’t want to do it.

Holidays I also realized can be little pressure cookers of stress! We want them to fun and fabulous. How many trick or treating Halloween’s are there in ones life time? Oh the pressure!!!!

This morning I realized, while reading a post on the fibular hemimelia support group that the holidays are not my favorite days. Sometimes I feel like they should be but if I am being honest, they really are not. Another mom was writing about her son having a hard time and not being able to trick or treat. I knew that feeling. I knew the emotions she was having so well and commented:

Nicks had some rough trick or treating years. He didn’t do it this year. He just refused but he’s 12. I could over analyze and wonder if his rough Halloweens have made him less into it but I think he just doesn’t care about it that much. I feel like holidays are a little like summer where I try hard at times to have as much fun as everyone else and make the most of it but my favorite days and our best days as a family are not the holidays anyway! All the pressure for it to be great and memorable isn’t really conductive to joy. For me…

I continued a bit more but I don’t want to share personal information about someone else and their child here. I hoped what I wrote helped this mother see that she is not alone. That these feelings are normal and that our kids really don’t seem to focus on the hard times. Nick does not talk about his hard time trick or treating last year or any other year.

To be honest I was kind of grouchy yesterday. I think I was upset about Nick not wanting to trick or treat, maybe it’s the bittersweet nature of him growing up. I also felt pressure to make it fun, be happy, it’s a holiday… etc. Well then the dog didn’t want to wear her costume, I didn’t know where the kids trick or treat bags were, getting everyone dressed stressed me, we were running late, Steven was not with us, Bess fell within the first 5 minutes…. I could go on. I wish I could stop this kind of spiral when it’s happening but I just smiled and wished I was off somewhere drinking a glass of wine!

A few hugs from neighbors and seeing friends out and about helped but I just prefer regular days. Holiday’s stress me. It’s fine and I don’t think it’s a unique thing to feel this way. Acceptance usually brings some easing of the stress so maybe next year will be better for me. It’s interesting to me though that I can be grouchy and grateful at the same time. I am so grateful for kind neighbors and my children’s happiness.

It was a beautiful night regardless of whether it was the best for not.

Retreat to the Easy Ship!

Earlier this month I was fortunate enough to attend the Being Bold Women and Power Retreat at the Omega Institute in Rhinebeck NY. It was AMAZING. Truly. I feel like a changed person. I have a renewed interest in leadership and a curious peace within myself regarding my path. I was fortunate enough to receive a full scholarship!!! I would count this as one of the greatest blessings of my life. The women I met seemed to be just the people I needed. There were so many messages and moments that touched me. It felt like magic. 

Before the retreat I didn’t want to spend a lot of time researching and analyzing. I knew Elizabeth Gilbert and Elizabeth Lesser would be there but that was it… That was enough. Still I knew the rest would be amazing as well.

And they were! I would love to write a little about each one and I will, at some point, but since this is No Fibula No Problem I must share regarding the speaker that was born with Fibular Hemimelia. Did your jaw drop? Are you as shocked as I was? Bonnie St. John was born with fh, had her leg amputated at age 5, and became an olympic skier. She is a remarkable woman. I wonder how much having been born with fibular hemimelia drives that. She never even said the words fibular hemimelia but when she showed a photo I knew. 

Bonnie talked about needing a new etiquette to talk about differences and she is so right. Bonnie was talking about all kinds of differences and in particular race. She talked about being color-mindful instead of trying to be colorblind, which really does not work. I tried this out and had an amazing experience which I really want to share in another post. Regarding limb differences, so often in our support group we talk about wishing people would just ask questions rather than stare at our kids! I can’t speak for everyone but I know a lot of moms have felt this. Although those who ask questions don’t always do so in a kind or respectful way. I believe it’s possible to ask in a way that is not hurtful. If people could bring curiosity to those moments, instead of judgment, on both sides of the conversation it would be a game changer. 

It would be a life changer.

Which reminds me of something Elizabeth Gilbert said, that the creative life is living from a place of curiosity instead of fear. 

Which reminds me that I really need to do that right now. 

Nicholas was having knee pain, which is somewhat better, but he’s now having foot pain. It’s the bottom of his foot and not his ankle. It’s the part of his foot that hits the ground really. His foot has a rocker bottom. It’s just so unique and the thing is, there is not a surgical fix. The last time this happened Dr. Standard called it a “flare up”. I am hoping that is all it is, and it will stop. I want Nick to be able to walk pain free. He’s in school with crutches today because using the air cast (boot) he has used in the past makes his knee hurt. 

When he is in pain my mind tends to go straight to fear! I hit the fear bullseye like an expert marksman. What if it the pain does not end? What if his foot really isn’t going to work for him? What will happen as he grows if his foot can’t handle his daily life now? He’s not even terribly active right now!!!! 

Fear spiral. What if’s. It’s all bad news. It’s hard. Part of me wants whatever will make this easier for Nick. Make it better. Moms make it better. Help him. Keep him home. Push him. All these thoughts going round.

Can you feel the fear spiral?

Approaching this from a curious perspective means observing, questioning, but not judging and spiraling.  

Maybe Nick’s insert needs to be replaced? 

Maybe I should bring him to Baltimore to get x-rays and not think beyond that?

Maybe I don’t have to jump to the worst case scenario? 

Maybe I can have faith that things have always worked out in the past and will continue to do so? I can be curious about how exactly that will happen, being fearful about it surely does not serve me or Nicholas.

I try to remember that the easy ship sailed 12 years ago and we were not on it. Fibular hemimelia was never going to be easy.

Maybe the easy ship is an illusion anyway? Is parenting ever easy? No. I don’t really think it is, but I admit to occasionally judging other parents who act like it’s so flipping hard meanwhile they have never had to worry about whether or not their child will walk pain free again… fear spiral includes a judgement spiral at the moment…. it’s just a moment. I know there are a multitude of fears involved in parenting, for more reasons than I can imagine, and some far more serious than fibular hemimelia.

I know we all want to retreat to the easy ship sometimes. 

I want to retreat back to my retreat at Omega. Instead I will review my notebook filled with notes. I will forgive myself for the fear and the judgement. Judging my fear is particularly perplexing and fruitless but forgiving it… 

Maybe I don’t have to go on a retreat to access the magic. Maybe I just did. 

Swimmers Legs

I don’t think swimmers legs are a thing. It’s just all I could think when I saw this photo. Maybe because he had swimmers ear and that’s been on my mind. When I took this photo Nicholas was diving in and I thought I captured the moment better than this, but then I thought this photo is actually pretty fun.

Tonight was the last home swim meet of the season. Nick swam several events and did it all pain free (to my knowledge). He’s been pain free almost all the time. He’s been doing a wonderful job swimming. He’s been hanging out with friends. He’s been free!

A free summer is what he wanted and I think he is there now. I almost cried watching him swim tonight. I don’t know why it comes over me sometimes and others I don’t think much of it but tonight…

Nicholas has worked hard to have two long legs. Watching him dive and swim really shows off just how long they are.

Overall I love that Nicholas gets to have this amazing team experience. Fibular hemimelia can’t stop a swimmer! The Arden Swim Team is made up of great kids, amazing coaches and dedicated parent volunteers. I don’t understand much about swimming but that doesn’t matter. The kids learn just fine without me being involved in the technical stuff. Though I do try to repeat what I hear the coaches say ….”Chin up! Big arms!”.

So summer is literally moving along swimmingly! My only complaint (and it’s a big one) is that I miss Charlotte terribly! She has been gone for over week already. I am sad she is missing almost all of the swim season. She is also missed by friends which is always sweet to hear, and as sad as I am, I am happy for her to be having her own summer fun with her cousins in PA.

Update:

Here are two cool shots of Nick from yesterday! It looks like the one and only Joe del Tufo captured the moment I tried to. That’s his camera in the corner of my shot! Check out Joe’s gorgeous photography here , we have two of his photographs in our home and I love them! Well two not counting other swim team photos! We are so fortunate to have talented folks in our community willing to share their gifts.

And there’s my boy looking like he’s taking off! I love it and him!!

 

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.

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!

Video Update

Since I was not at Monday’s follow up (not my choice I still have arm restrictions), I figured I would let Nicholas do his own update. Things are progressing nicely. He’s got 2.8cm of new bone which means he’s more than 1/2 way there. He’s currently not having pain generally, some discomfort yes and actually pain during pt but most of the time he is pain free. Nick just said he is pain free except for “painful times”. He’s got a sense of humor about it all which I am rather proud of. He’s a an amazing kid and this really is an amazing process.

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.