#STANDARDIZED

I am not a hash-tagger. I could probably count on one hand how many I’ve used them over the last few years since they have become a thing. However, I may be becoming a convert. Chandler, one of our RIAO friends, created this one and you can check her out here. Dr. Standard really has the perfect moniker for such things.

Now back to he who has been #standardized, over and over again… Nicholas is doing really well post op. Super Leg surgery was on Wednesday. Today he is being weaned off his epidural and so far so good. He’s eating some, drinking well, sleeping a lot and generally handling this experience like the champion he is.

As for what Super Leg means, in Nicks case it involved a lot more knee work than I thought. Dr. Standard too a piece of Nick’s IT band and made him an ACL, he tightened the ligament he gave Nick in his first super knee surgery and he cut off a flap that was a meniscal tear and was probably causing Nicks popping an pain.

Nick also got a 2nd eight plate to correct his valgus so he has 2 now.

The Precice rod was removed.

Nicholas ankle and foot got the super treatment as well. His heel was brought down so he no longer has the rocker bottom and his ankle was fused.

On the left he had staples and a screw put in to stop the growth of his tibia. These things are removable if his growth trajectory changes and nothing was done to his femur but that can be at the age of 14. So we can watch his growth and see what happens.

Today Nick’s post op splint was removed and a cast put on. Allison did that and it went so much smoother than I thought it would. Usually removing anything is stressful but it went great. Nick has a temporary brace for his knee but a more specific one should be coming this afternoon. Dr. Standard does not want him to bend his right knee for the first 2 weeks post op and then he will start bending gradually. For Nick’s left leg we have already received exercises and started them yesterday with the help of PT. Inpatient PT and OT help so much through this process. They are so understanding and really got Nicholas going despite his reluctance. This time he didn’t resist too much though and he realized pretty quickly that for his left leg moving and bending felt kind of good.

After taking some steps and getting into the reclining chair also known as my bed for the last few days, Nick is asleep. If all goes well he could be released tomorrow. He’s had his sushi. He’s up and moving. As long as his pain stays managed we should be good to go tomorrow. Super leg inpatient stay almost complete.  #superleg, #nofibulanoproblem, #standardized, #tiredbutsupergratefulmothersigningofftotakeanap

The House That Builds Love

This post is actually a reading I gave at the Unitarian Universalist Congregation of the Susquehanna Valley. Their charity of the quarter is the Ronald McDonald House in Danville, PA.

You might have heard that Ronald McDonald House is “the house that love built”. I believe that’s true, they would not exist without the loving donations of millions of people like you but what you may not have heard is that RMH is also the house that builds love. To be clear we have never stayed at a Ronald McDonald house. When my son Nicholas has had surgery we have stayed at a place called Hackerman Patz house (aka HP). It is right across the street from Sinai of Baltimore where he has had 13 surgeries on his right leg for a birth defect called fibular hemimelia. When HP has been full we have tried to say at RMH but it has always been full as well. Hotel rates when you are facing stressful and expensive surgery for your child are not easy to pay but we have,and many families do, every day.
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I know we are fortunate to have lived within two hours of our son’s surgeon. With Nick’s biggest surgery we were members of this congregation and came home to you and received so many meals and so much support. I can’t express how meaningful and helpful that was to us. We were so lucky to be able to bring Nick home to our community. So many families can’t go home and still get their child the care they need. They move into these community homes tired and scared but soon learn they are not alone. Places like HP and RMH turn strangers into family. Sometimes very quickly. As fortunate as we are not to have needed to say long-term at HP, I know we missed out on the bonding and connection that comes from living with families going through the same type of things you are. Communal meals, movie nights with popcorn, support, celebrations, and yes stress, surgery, treatments, sadness, and sometimes loss but always love. hp
We do go to HP a few times a year to meet up with friends and meet new families who have children with orthopedic conditions. Meeting and connecting with families that know exactly what you are going through is so powerful. These connections offer inspiration, healing and so much compassion. Places like HP and RMH house all of that.
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For the last two years we have gone down to HP for mother’s day to bring the families there a home cooked meal. This has been really special way to spend mother’s day. This year there was a mom there with 5 children, on her own. Some of you know that I am the mother of four (so I think moms of 5 or more are like crazy super hero’s) and other than daily appointments I have never had to bring all my kids with me when Nick needed surgery. This mom was amazing. They were already there for months and not heading home soon. For families like hers without places like RMH and HP her child might not have been able to have the surgery needed to keep her leg. When you need specialized care the likelihood of finding it close to home is rare.
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One of the reasons we chose to move to central PA was its proximity to Baltimore. Most families can’t move for medical care. We built our life around Nick’s needs. We were so lucky to be able to do that. When you have a child with special needs or a medical condition or an orthopedic condition you end up in places your never imagined but you also end up feeling love you never imagined. I am so grateful for the love that builds RMH’s and places like them and even more so for the love that these houses build.
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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!

Legs!

Monday was Nick’s post op appointment with Dr. Standard. The op being the 8 plate insertion back in January. It felt like we had not been there in forever, however through web chats, following other families, and having the fh potluck at hp (Hackerman Patz) in March, we didn’t exactly feel out of touch. 

Here’s the pic that really says a thousand words… To me it reads like a song. A very cheerful tune. Maybe an Irish jig.

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You can see the 8 plate in his knee, you can see that there is a length difference (Just 2 centimeters!!!) and you can see that my boy has really long legs. 

That’s what strikes me. Two long and straight legs. Dr. Standard said that everything looks great. In fact I had a bit of a surprise. Years ago we had talked about Dr. Standard doing a “final correction” to Nick’s ankle. This surgery would involve a diagonal cut through Nick’s tibia which could not be done till the growth plates at the bottom of the tibia were closed. So this was a surgery that would be done at the end to get Nick’s foot into the right position. The right position being directly under his leg. 

Well it turns out Nick’s foot it is in the right position or as right as it needs to be. I guess we’ve had so much going on at the last few visits I hadn’t really talked to Dr. S about the long term stuff. Now the long term stuff is just lengthening (internal lengthening by the way!!!!!). And of course 8 plate removal will have to happen. 

So this means Nick is really done with external fixators. Done. No more. Bye Bye! I was pretty excited discussing it with him in the cafeteria after his appointment and Nick said “You never know Mom. Don’t get your hopes up.” That sounds kind of negative but he really didn’t say it in a negative way. Just sort of ‘hay you never know’.  Of course he’s right and yet… 

It feels like a victory to me. Look at those legs. Nick will be 10 in August. He’s getting closer and closer to my height. We can share t-shirts now and if I were slimmer I bet we could share pants too. He is growing and thriving and running and playing and that’s the dream coming true every day. 

I will post soon about the fibular hemimelia potluck (another one is coming soon), Nick’s foot (because it’s all about a functional foot in the end), and the five fibular hemimelia families we saw at the RIAO on Monday! Yes FIVE in one day. There may have been others for all we know.

Tall and Humble

Thats what Nick called himself recently. We were discussing teasing and bullying and he said kids in school use to go to him for help because they knew he was tall and humble and therefor would help them. It was a really sweet conversation. Nicholas is a seriously compassionate boy. He’s not the tough guy type but he would not stand by while someone else suffered. I am so proud of him. 

On the tall front Nick was worried today. He came to me and said “Mom I don’t think I am growing much anymore”. I asked why and he said because he still does not need a shoe lift he must not be growing. I pointed out that his lengthening surgeries can stimulate natural growth from the bone that normally grows at a significantly slower rate. He was so excited about this. Another good thing to come out of surgery. 

Truth is he will see Dr. Standard next month and for all we know it may be time for a lift again. The fact that he has gone without one since the last fixator came off is awesome no matter how much longer it lasts. 

On a personal note I have connected this week with a few new fh families. Wether they have tiny new babies or kids like Nick I feel such a kinship with them. I am so glad people come here and feel comfortable reaching out to me. Nick is also proud that sharing his story helps others. He still believes he is the most famous kid in the world with fibular hemimelia. He still sees so much positive in the hard hand he’s been dealt. In fact he said he wanted to have a surgery soon so he could go back to Sinai and so he could get a new video game. He’s too much.Image

Thanks for the awesome pic Aunt Tara! 

Normal Nick

I have dreaded writing on this blog. Sometimes it feels like every time I write something positive something bad happens. I know it’ silly but it worries me.

However I am taking a chance and writing anyway. Nick seems to be back to “normal”. Normal is not my favorite word anyway but still he is just living life like a regular kid. He’s walking and running. He’s going out to play with friends. He’s not in pain.

That’s the best kind of normal there is for us. Not in pain and moving freely. It’s good timing too because this weekend is the 7th annual save a limb ride. We have been there each year. We’ve not always rode or walked but we’ve been there. This year we will have a fibular hemimelia table. I am so excited to meet some of the families who I have known on line for months or in some cases years. This year will be so special because of this and because Nick had such a hard year and is doing so well now.

Another thing I have realized is that I have actually helped a lot of people by writing this blog and creating the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. We didn’t raise as much money as we wanted to this year (it was a hard year for us as a family) but we are working year round to support the fh families. I get multiple messages each week from folks looking for advice or support and I am always happy to help. I am so grateful to these families who reach out to me. Helping them has been so meaningful. Everyone likes to feel useful and it makes me feel very useful. I also appreciate all the appreciation! Reading about how I have helped someone warms my heart so much.

Nick has been though so much. This is all about him after all but it is actually about our whole family and me as a mom (that’s a lot of what I write about). Being able to make the most of what life gives us is something I am proud of. Being able to take it a step further and help others gives my life additional meaning. I don’t know how many families have been touched by this blog. I don’t even know how many I have emailed with but I know that I am thankful to them for reaching out to me. My life and my heart are fuller because if it. I believed this is something I am meant to be doing. Call it a calling or call it whatever you like. It is, next to parenting, the most important thing I have done with my life.

Check out the No Fibular No Problem Fundraising Page and please give if you can! You can help save limbs too!

No Fibula No Problem?

So much on my mind as I type this. Nick has been having some random pain. It’s mostly gone. There is a hot patch on his leg. Basically right in the middle of his leg in an indent created by a few half pin scars it’s warm to the touch. Not swollen, not red, very slightly tender and warm. These things had me on the phone with Allison from the RIAO almost in a panic. Talking it out with her we both decided Nick was probably and justifiably hypersensitive after all he had been though. After I hung up with her I realized I was probably hypersensitive too.

All the excitement of the previous day created a kind of hangover and then to have Nick in pain created a bit of panic. Of course I was worried that there was an infection brewing or something equally horrible. My chest tightened. I became short with the kids. I ate 1/2 a pack of twizzlers in 3 minutes.

After talking to Allison I was calmer but still had this tightness in my chest. I am really worn out on worrying. Really. Nick is too in a way. He basically was insisting that we go to Dr. Standard even though I said he was fine because his point was “I wasn’t fine before and we didn’t know”.

He is right. We are dealing with the fear of the surprise surgery. Thinking all was well and done and then getting hit like a ton of bricks. Maybe we are in a similar place Nick and I.

Right now Nick is not to jump or run but he is still walking. Generally he’s got to take it easy. He was calmer today. There were some conversations on Facebook in the Fibular Hemimelia and Limb Lengthening Awareness group about the fact that it is “fibular hemimelia” but it’s really the tibia that sees all the action surgery wise. If someone has a fibula it essentially goes along for the ride. For whatever reason that stuck me as interesting.

When lengthening the tibia the fibula has to be cut and it is connected to the tibia. No pins and wires are in the fibula but it is pulled apart as well. Literally going along for the ride. Anyway sometimes it does not reconnect but for some people it is a non issue. It is ok to have two pieces of fibula not connected. For some people it is a problem which made me feel like Nick is kind of lucky to have no fibula to worry about at all. No Fibula No Problem.