New Brace, Old Questions

IMG_5570I am so excited to report that Nick not only has his new brace but he is also wearing two shoes that are the same size thanks to the brace and shoe insert/filler. It was exciting and strange to see this for the first time on Tuesday. By next week Nick will be back to playing football and living his life without limitations. I am so grateful for that.

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I promised families in our facebook group a post on the brace and that is coming. I am not sure it is going to be the answer for all fibular hemimelia kids because some kids have ankle motion and likely wont need it. Yesterday though a question sparked an over 60 comment discussion and that is on my mind today. The poster asked if anyone had faced amputation as an option after having done many surgeries for reconstruction. These discussions always spur further questions and one thing I end up coming back to is that the skill of your surgeon or your child’s surgeon will determine the outcome of the reconstruction option more than anything else. With physical therapy and parent compliance following close behind and being absolutely vital as well.

When Nick was a newborn we took him to a doctor in NYC, Dr. Al Grant. He was familiar with and had treated fibular hemimelia. We were lucky to get an accurate diagnosis and layout of treatment options right away. Dr. Grant suggested we go to Baltimore to get a second opinion from Dr. Paley. Grant was on the fence regarding what would be best for Nick. He subscribed to the idea that 2 toes meant amputate and 3  meant reconstruct. Nick has 3 toes but it looks like 2 because two are together.

The RIAO blew us away from the start. We got to see Dr. Standard, who had arrived there a few months earlier and Dr. Paley. At the end of the consult we asked Dr. Paley if Dr. Grant could do what he could for Nicholas. His response “I can’t tell you what he can do I can only tell you what I can do”, was an honest one and it reminds me of my constantly suggesting families in our group take their kids to an expert, at least for a consult and for treatment if they can. That’s what I know.

I cant say what any other doc can do, though I have read things on the group and received priveate messages and emails from families that recount some unfortunate examples of doctors trying to do what they can’t. I can share with confidence what Dr. Standard has done for Nick and so many other kids that I have seen for myself. Nicks fibular hemimelia is on the severe end of the spectrum and I am sure that Dr. Standard’s skill set and experience are the reason Nick has had the wonderful outcomes he has had. When things have not gone according to plan Dr. Standard was able to handle it. He makes it look easy but I know that’s not always the case. He knows fibular hemimelia. The newest way he knows fibular hemimelia is collaborating to create this brace for Nick and other fh kids with stiff/fused ankles. Years of treatment has helped him see what these kids need long term.

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We didn’t plan on Nick needing a brace but I still consider this a wonderful outcome. The brace enables him to do what he wants and he still gets to wake up each day and stand on his own two feet. Lengthening and reconstruction is evolving just as prosthesis evolve for kids who have the amputation option. Nick’s brace is made with the same carbon fiber technology that some prosthesis are made of. I am so grateful technology seems to be moving fast enough to keep ahead of what my boy needs!

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Save-A-Limb 2014 October 18th Oregon Ridge Park

Save-A-Limb has always been one of our favorite days of the year. Like a holiday for our family. We love meeting other fibular hemimelia families and connecting with some again and again. We love seeing our RIAO family and celebrating our kids while supporting the fund.

This year sadly we will not be there. There is an event in our community called The Adventure Games. Nick loves it!!! It was the same day last year and he missed most of it so this year he has decided to do Adventure Games. We are still excited to be fundraising and hope that you will consider making a donation. Nick is able to participate in things like the Adventure Games because of the care he has received a Sinai through Dr. Standard and his amazing team! We will never stop being grateful and never stop supporting SAL!

IF you like bike riding it is a GORGEOUS ride! Please consider registering. All are welcome. In fact they truly need riders to keep the event thriving.

9th Annual Save-A-Limb Ride Event Details

Date: Saturday, October 18, 2014, 8:00 AM

Place: Oregon Ridge Park, Cockeysville, MD

Activity: Scenic Rides – Metric Century, 30-Mile Ride, 15-Mile Ride, 6-Mile Family Ride

Fun Events – 1 Mile Family Walk, Picnic, and Festival

Beneficiary: The LifeBridge Health Save-A-Limb Fund

Course: Ride through Maryland’s beautiful horse farms and rolling countryside

Website: www.savealimb.org

Better yet join Team No Fibula No Problem HERE. It is a beautiful ride and beautiful opportunity to save limbs like Nick’s from amputation!

Oscar Pistorius was born with Fibular Hemimelia

Did you know that? Maybe not since most articles I have read don’t mention it. If you google “Oscar Pistorius Fibular Hemimelia” it does come up. I didn’t watch the Olympics so I don’t know if it was mentioned there either.

Some say he had an advantage despite scientific evidence otherwise. Prostetics have not yet advanced passed the ability of the human body. At least as far as my googling shows. If you’ve not got feet, and ankles, and calves you’ll have to use what you’ve got to make up for it, and that is quite a feat, carbon fiber springy legs or not. Still it’s really hard for me to look at this guy and think “disabled”.

When Oscar was born I doubt his family had any other option other than amputation. Even if they had options they might have still chosen amputation as many parents still do. There are kids on the various FH support groups with bilateral FH and prosthetics. I am sure they, and their parents have found a hero in Oscar Pistorius.

It’s a beautiful thing for a child to be able to look at their television and watch this amazing man, who is “like” them, run to the cheers of the world. I am thinking there will be kids asking for those amazing cheetah legs like crazy now. Most kids I’ve seen on the support groups don’t get those legs. I doubt most insurance would cover them. Which makes me wonder if Mr.Pistorius might be just the person to help these children get better prosthetics. Couldn’t an olympic athlete raise awareness and fundraise to an extent that most of us do not have the ability to.

Ahh… ability. We’re back at that again.

Oscar is quoted as saying “Being disabled doesnt have to be a disadvantage.” That sounds great and rings true but I can’t help but wish Fibular Hemimelia was mentioned more. I can’t help but wish he would use his fame to benefit children born like him who might never have access to those amazing prosthetics which enabled him to compete at the highest level possible. All kids with cheetah legs won’t all make it to the Olympics. But we’re not all born athletes wether we arrive with all the usual bones or not. He could raise awareness of FH in general and benefit all children born with limb defects.

Oscar Pistorius is an athlete. He is an athlete who was born with Fibular Hemimelia which was treated by amputating his legs below the knees. I suspect that if he was born with his fibulae in tact he would still be an athlete. If you took the time to look at his body beyond his legs I think you would see that this is true. He is an Olympic athlete and an inspiration and to be celebrated as such. He may not have entered the Olympics with an advantage but he sure does have one now and I hope he uses it.

From our families perspective it’s just not been that high on our radar. I don’t think it’s come up that much but last night I started to wonder. Nicholas woke up crying from a bad dream. In his dream he said he had a surgery on his leg but Dr.Standard couldn’t fix it and his leg fell off the operating table and he woke up with a prosthetic. As he told me this he was crying and holding onto his leg.

Nick has known for a long time that amputation was an option and for many the choice treatment for FH. Maybe having to have an extra surgery has made him scared and that influenced the dream. I don’t know really but what I do know is that Nicholas could not imagine a life without his leg. I know that even with an amputation and a cheetah leg Nicholas would not be an olympic athlete. It’s just not who he is.

I had a doctor (a pro lengthening doctor) tell me when we were choosing between amputation and lengthening that Nicholas would never run a marathon with his own leg but he could with a prosthetic. This doc didn’t think that was a reason to amputate. I didn’t either.

Oscar Pistorius is inspiring to me like anyone who is able to overcome and achieve greatness. For him the “No Fibula or rather No Fibulae, No Problem” title fits quite nicely. He’s just not going to be the guy my boy points to and identifies with. Even though he was born with Fibular Hemimelia, which you might not have known until you read this.

“no fibula” google image search results. Nick believes he is the most popular person without a fibula. I hope he’s not upset that Oscar is gaining on him. Kinda funny to see them side by side. Nick is still first though ; )

Live From Sinai

So while it was all ok few weeks ago it wasn’t on Monday when I brought Nicholas to see Dr. Standard to check on his leg and arm. As soon as his cast came off Nicholas and I both knew it didn’t look right. And of course the films revealed it wasn’t. I am usually super calm but but I had to go find Dr. Standard. I told him Nicks arm looked wrong and that I was panicking a little. He came in and said he hadn’t seen the films but it could be swollen…

On the leg front there was a bit more of a surprise. I wish I knew how to post a photo from my iPad cause the image was a little freaky. Kind of like rod going one way and bone going another. Stacy the tech who was working with him had trouble finding his knee cap. I could tell it felt funny to her. Maybe Nicks knee is funny but his kneecap was usually not hard to find.

It’s also funny cause Steven said he thought Nicks legs didn’t look even anymore and Nick was walking in a really kicked out way. I thought he was still walking to accommodate the ex fix or phantom ex fix but when we arrived Dr. Standard saw Nick walking and he knew.

All this knowing going around and then the whammy. Surgery would need to be the next day (yesterday) on both his arm and leg. The arm just needed a little push back into place. Not a big deal and not at all uncommon. I asked Dr. Standard what would make it stay in place this time and he said the bone would now be sticky. We are thankful for that stickiness which made it an easy fix.

Nick’s leg was a little trickier. The way Dr.S explained it to us was that he would use a fixator to put the bone back in place and the put a plate on it to keep it there. No fixator after surgery though. Just in surgery. Nick heard pins and for a moment he looked stricken but was relieved that he wouldn’t see anything sticking out of his leg after surgery.

Sudden surgery was a pretty new experience for us. Part of me was really expecting an awesome report, a short waterproof cast, maybe an Rx for physical therapy to help his walking! But I have been feeling uneasy and worried and just that general something’s going to happen feeling. So I am not totally surprised.

Helping Nicholas not be depressed by this was my first priority. He was already feeling quite unlucky to have broken his arm so soon after leg surgery. I asked him “what are we?” he said “strong” and I said “brave”. Then I asked “what do we do when we’re scared?” and he said “what’s right” and I said “we do it anyway and we make the most of it”. And that’s what we did.

Making the most of it meant enjoying our Mommy/Nick time together. We went shopping, to dinner and stayed at the Raddison. We brought dessert back to our room and watched movies. We got snacks from the vending machine at 10pm. We made silly videos and danced and laughed!

We know how to make the most of it and we know how to be brave. Going into surgery Nick was nervous. He was shaking which is not like him so I had to distract him fast. I suggested his surgery dream be a lego star wars one and asked him what his ship would be. That worked like a charm and before I knew it Nick was asleep and I was on my way back to waiting area.

On the way a man approached me (clearly thinking I worked at Sinai) asked me where the cardiac waiting area was. I told him I didn’t know. It was a funny little moment that broke some of the tension I had building. Going back to the waiting room knowing Steven wasn’t there was hard. Still I did my usual stuff, got coffee and a magazine and waited. Nurse Harriet came out to talk to me twice. The first time to tell me things were going well but taking longer than planned and the second time to say they were about done and Dr. Standard would be out to talk to me soon.

When Dr. S cam out he said everything went great. Arm went right into place and his leg was back on track. Maybe straighter than before. Back on track and great are really all I heard. I was just so relieved. I suppose when things go wrong it makes me wonder if things will keep going wrong. You really can’t take anything for granted so I was preparing myself to hear that he lost length or had some complications but there weren’t any.

Nick is currently as comfortable as a kid who had surgery yesterday and still has lots of wires attached to him can be. Steven came late last night which was just a relief. Even when things are going fine it still helps and I was able to sleep more than if Nick and I were alone.

Last week there was a crazy thread on one of the Fibular Hemimelia facebook groups and some things were upsetting to me. One person who chose amputation for thier child wrote that one thing that influenced their choice was that a doctor said “Kids who have lengthening are patients and kids who have amputations are athletes”. I wrote a long and thoughtful response to that one. I would love to get that doctors name and post it all over so families who want an unbiased and actual fact based assessment can avoid him/her.

Anyway one of the things I wrote was that “the easy ship sailed when Nicholas was born with Fibular Hemimelia”. Maybe the easy ship sailed for me when I became a Mom. If anyone is looking or an easy solution or to make life easier for their child they need to get a clue. FH or no FH life is life and so very much of it is out of our control. Maybe that idiotic doctor should ask the family whose child has had 13 surgeries despite the fact that they chose amputation how he would assess their child. What category would he be placed in? Or check out the kids who have had lengthening and ARE athletes!

Today Nick is a patient. I am hoping he will not be for a few years but I can accept that that is out of our control. I have faith that if something happens to Nick’s leg or any other bone Dr.Standard will be able to fix it. I know that being a patient from time to time is not destroying my boy. He’s a happy, healthy, compassionate and brave kid! I think that trumps athlete any day!

Amputation Versus Lengthening Again


Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;
Footprints, that perhaps another,
Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.
Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.

A Psalm of Life has struck me today as pure brilliance. In that Oprah ah-ha moment sort of way! I guess I always like a footprints image. Maybe because of Nicholas’s unique foot prints. I do like to imagine that others will have an easier time on this particularly unique road through fibular hemimelia becaus we have shared and left our footprints behind.

There’s a conversation on the Facebook Fibular Hemimelia and Limb Lengthening Awareness page that’s taken on a life of it’s own. It’s the amputation versus lengthening question. It’s awful to read some comments which are neither personal experience nor fact based but it is what it is.

What it really is, is a very emotional question. When you have doctors tell you that there is no right choice, it really does not make the decision easier. I’ve said before that this is a choice parents should never have to make. To keep or amputate their childs limb. Never mind that there are likely doctors strongly advocating one option or the other. While they say it’s your choice.

Really, what happened to “there’s no right choice”? Of course a doctor is likely to think the treatment they are familiar with is better. First of all its what they can do. Secondly they have seen their patients thrive. They’ve watched the two year old with her first prosthetic leg taking her first steps or the two year old after her first super ankle surgery and lengthening doing much of the same. Really as hard as it is to believe kids really will be ok either way. They will find their way, accept their difference and live their lives. Thank god for that! It’s not easy but children are amazingly adaptable.

Still there will be moments when as a parent you will have to explain your choice. “You were born this way” or “God made you this way” will only fly for so long. One day you will have to face your child and say “We chose this for you because…”. You will owe them the truth. You can’t make a choice like this about another persons body and not explain it. I’ve had this conversation with Nicholas. He knows that amputation was the alternative. So far he feels we made the right choice. Had we chose amputation would he feel the same way? I think so and hope so.

Once you make the choice you have to make it right for your child. I am sure most people do just that. But we all then become attached to our choice. It’s impossible not to get defensive when I feel someone is suggesting parents who choose lengthening are choosing hell or torture. I try not to. Sadly reading that a child with an over 20cm difference, needing multiple ankle surgeries, and a super knee and an eight plate, who has two toes, etc… reading that this child, my child, could be doing great makes people who chose amputation for a similar or lesser level of deformity get defensive. I get it. Doctors told them it wasn’t possible. But it is.

Just because it’s possible does not mean I think parents who choose amputation are making the wrong choice. Just don’t come to a support group and say lengthening is not an option in such a case. If you were told it wasn’t an option for your child say that share your family’s story. Maybe your footprints will help someone else take heart again!