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.
I am sharing this brochure that Nurse Lee shared with me to help anyone who would like a better idea of what is in Nick’s leg. He also had an eight plate put in but he’s done that before and I think I have old films of that here somewhere. Monday we will have actual X-rays of Nick’s leg to share I am sure!
I’ve been thinking about what it will be like when we bring Nicholas home, which may be tomorrow. Having a child have surgery is like having a newborn. We will be up every few hours to give him pain meds. We might need to give him additional medication for muscle spasms which are likely to occur at some point in the process. We might have to guess what he needs in the middle of the night. It will be exhausting but we will do it all with a zombie like enthusiasm. Seeing him vulnerable and wanting to keep him from suffering reminds me of the anxiety of having a new baby. You just want to do everything right. Your baby can’t survive without you. Yes we will be exhausted but we will be desperate not to screw this up. We have missed doses of pain meds in the past. We know how awful that is for Nicholas.
Surgery Is a team effort. Nicholas has the hardest part and then Dr. Standard and his team have a seriously complex part. I will never stop being amazed by what is possible.
Eleven years ago I could not really imagine the PRECICE. Internal lengthening existed but it was not a possibility for Nick. It was kind of random and not worth the potential risks. This PRECICE device is just that, precice. It will do what it is programed to do (of course we have to hold it on Nick’s leg and push the button at prescribed times each day… we will be ruled by routine like with a newborn!!). I am starting to feel the joy in the absence of pins and struts, nuts and bolts. Been there done that! We are so grateful for the 17 centimeters and deformity correction that external fixators made possible but Nicholas was so ready for PRECICE.
Physical therapy will still be hugely important. Nick will need to maintain extension of his hip and knee. The lengthening will make his leg want to curl up and we will work to keep it straight and strong. We will do some at home but we might need to do more formal therapy than in the past. Nick will need to be back in Baltimore Monday for follow up in the clinic and pt. It’s going to be a busy few months!
Today my boy has done a little physical therapy, gotten out of bed a few times, transitioned or oral pain meds, ate more sushi, reminded us to wash his hands, said “This is not just about me. I want you guys to be comfortable too”, expressed himself when he had discomfort and smiled with joy when discussing his mostly pain free experience (although I think what he calls discomfort I would call pain). Right now I am grateful for a great many things and one of them is surely pain management! I am grateful to my mother & father-in-law who are caring for Charlotte, Christopher and Bess! We miss them so, so, so much but we know they are ok. We are also grateful for friends and neighbors who are there if needed and have helped make the kids feel special and cared for. And to any of you reading this and wishing Nick well! Thank you!!!
I accidentally out-ed myself as Santa. Nick needs a new charger for his computer that “Santa” brought for him and I said I would order it. He offered to bring me the computer so I could order the right one and I said no that I could just check the order. His “gotcha” expression said it all. I could not even speak. I was shocked at myself. When I could speak I said “Did I just do what I think I did?” Nicholas said no, and that he had been questioning for a long time. Something about this still felt so sad to me. I didn’t necessarily think he believed but we all behaved as if he did. Something about keeping up the farce kept it “real”.
Nicholas is growing up. Literally up, up, up but he is also changing in ways I can’t see but I can certainly feel. It is already an emotional week with surgery coming up on the 24th. This Santa business just put me over the emotional edge! I just need a good cry so badly! Nick is also visiting middle school on Wednesday. He has to do an interview for a specific program, which he is really hoping to get into it. It is interesting to have him want something and for me to really not be able to make it happen. Ahh… parenting! Nick, like my other three children, is a joy to parent but parenting comes with such a broad range of experiences and emotions. Minute to minute they change. This is life. I get it. Surgery is the kind of thing that puts it further into perspective. That is a kind of gift in and of itself.
Last night Nicholas also came to me to talk about surgery fears. He knows it is expected to have fears. We talked about the usual discomforts and things that are out of our control. He was happy to learn that he can weight bear some right away. He was worried about getting around within our house.
Nicholas has an amazing perspective for an eleven year old. He decided on the timing of this surgery and I am realizing more and more that he is a part of the team in a new way now. We have to included him in all decisions regarding his care. Being part of the Ethics Committee at our local children’s hospital reminded me of this recently. It’s really easy to think that because he is not eighteen he is not the decision maker but that is just not true and most certainly not ethical.
So Nick is expressing his surgery worries. I have shared some of mine. The rest of the household seems be a little on edge as well. Nick’s siblings worry about him. Their lives are impacted too. Meeting everyone’s needs through it all really has the potential to stress me but I am focusing on one day at a time. Today I had an 8am meeting and later I have a doctor’s appointment but I have dinner in the crock-pot already (Corned Beef…Happy Saint Patrick’s Day!!). If I had more time on my hands I would prep crock-pot meals and freeze for post surgery but I have schoolwork to keep me busy this week. Graduate school and surgery are not the easiest mix but I am taking that one-day at a time too. This weekend I plan to do as much of next weeks work as I possibly can!
I have also accepted the fact that this is simply not going to be an easy season. Limb lengthening is a huge deal. It just is. Even with everything going well it will take over our lives. We will find a new normal for a while. This is ok. We are so lucky that Nicholas has an amazing team at Sinai to care for him; we are lucky that Grandma and Grandpa can come and care for the crew at home, we are also lucky to be so close to Sinai so Steven can go back and forth some.
We are lucky. Surgery has helped me see that. It is a perspective I mostly wouldn’t trade that for anything but of course there are times when I wish Nick didn’t have to go through any of it. No matter how beautifully he does. No matter how freaking awesome he truly is through it all. There is a part of me that just wants to protect him from everything. I think thats just part of being a mom.
This is where I am today. I do try to be positive here and I do have some other more fun things to write about, and I will, but right now I am just stressed. This stress, I realized today, is making me interpret other things as more negative than they are. I feel ultra sensitive and like a raw nerve.
I know it is normal to feel stress because of surgery. I kind of feel like it’s everything surrounding the surgery that is stressing me, and not surgery itself, but that also makes me wonder if it really is about the surgery.
The one thing I know for sure is that I am thinking too much. Meditation helped some. A snowy walk in solitude helped too. My healthy kale and eggs lunch… not so much! I need a snow day chocolate delivery service. I know it wont fix anything, but the heart wants what it wants. It didn’t help that I started the day with a crazy headache that I can’t seem to shake completely. It’s the weather. I know it is.
Staying in the moment is a remedy I know but it’s just not working right now. I had expectations of my week off from school that are not panning out. Expectations are evil, IMO. Maybe this post is just venting. Maybe I just need to say I feel shitty. I wish this surgery was not happening now. I wish Nick wasn’t up to surgery 14. He’s doing so great but it’s still a lot. Thankfully he remembers only a few surgeries really but some days it feels like it sucks that he has to go through all of it so that he can have two functioning legs for the rest of his life. Sometimes I feel like the whole rest of the world (almost) takes legs for granted. Myself included.
I worry about all the random things that can happen in surgery. I have crazy fears. I don’t care to type them. At some point this will all give way to peace and acceptance. I know it will. This agitation and stress is not my natural state but its my state right now. Maybe just letting it be and not resisting would help… maybe it has.
Nicholas has requested femur lengthening as soon as possible. We knew he needed to have this surgery within the next three years but Nick does not want to have it during middle school and he does not want to have it during the summer. His reasoning is that he is very comfortable in his current school, with his teacher and his friends. It’s a really valid argument.
I thought Nick would want as much time as possible between surgeries. Apparently that was my thought and not his. He wants as much of summer free as possible. He doesn’t want surgery during middle school at all if possible.
I knew surgery would happen in middle school so I was looking into getting him a 504plan. I figured Nick would need more accommodations in that environment.
It is hard to imagine this surgery happening soon. I’ve connect with Dr.Standards office and hope to hear back soon. This choice can’t be entirely up to Nicholas. Dr. Standard has to see if his leg is ready. Hopefully I will be posting soon with surgery plans. It’s a strange thing to hope for but I really want to support Nick in taking control of as much of this process as possible. It’s his life and his leg. I’ll make it work as well as I can for my boy.
Hello! I’m a 17 year old high school student in British Columbia, Canada. To people that first meet me, I may seem just like any other student that walks the hallways of my school. Hardworking, at times outgoing, and at other times quiet. I have a passion to make a difference in the lives of others and change the world. I have goals and dreams that I believe I will achieve, and won’t let anything stop me. Those that know a bit about my past understand why.
When I was born, the doctors could tell that there was something wrong with my leg. Later on, we found out that my left tibia was bent outwards and grows much slower than my other leg. I have had limb lengthening and straightening using the monotube and the illizarov. In order to correct this birth defect, I have had ten surgeries. Now, if someone were to look at my legs, all that’s left are some faint scars. Other than that, one might notice the fact that my left foot is a couple sizes smaller than my other foot. If someone were to look at an x-ray they would probably see a snapped screw embedded in my tibia and a fibula that does not join together in the middle. But my left and right legs are now the same length and the bow that was once there is barely noticeable.
This road definitely has not been an easy one, but it’s been an amazing one. I would not wish to change any of my past. Throughout the surgeries, there were complications; broken screws, infections, snapped wires, and bones that weren’t lengthening properly. It was odd for me to end up with so many different problems along the way, but every experience is unique and you never know what tomorrow will bring. Every moment has taught me something extremely valuable, and has made me who I am today.
I’ve noticed that when children are faced with obstacles like this, they definitely fight through it. They fight through the pain, the frustration, and the different challenges put in their way. Quite often, they do it with a smile on their face. There are definitely moments when that smile doesn’t show (I know, I’ve been there) but no matter what, it always comes back. Children are absolutely resilient.
At times, I’m sure it’s also difficult for parents. I can’t even imagine what it would be like seeing your child cry in discomfort or express frustrations that you can not do anything about. Although I don’t know what it’s like for a parent to watch their child experience this, I know what it’s like to be the child. And honestly, the best thing that parents can do is just be there. Sometimes the best medicine really is laughter, smiles, and to remember everything that’s positive.
Like I said, if it weren’t for the things that I’ve been through, I would not be who I am today. I’ve connected with so many people and formed such meaningful relationships. These people have helped me through so much and are so important to me. I’ve been inspired to help others through the challenges they’re faced with. I volunteer in my community in any way that I can, I support so many different causes, and recently helped to build schools in both Kenya and Ghana. I’m actually currently fundraising to go back to Ghana. In the future I would really love to have a career in the medical field as well as continue to help locally and globally.
I tell others the difficult stories of my past, and the amazing experiences I’ve had along the way because I want to show that anything is possible. I want to share the importance of always believing, holding onto hope, and reaching for our dreams. I take any opportunity that I get to do public speaking, as well as regularly share my thoughts in my blog, ilaughlovedream.blogspot.com. I find these things so important. I am grateful for the obstacles placed in my path because they have shown me how to not only exist in this world, but to truly live.
Keep dreaming & keep believing,
I am about to loose any street cred I had regarding knowledge of fibular hemimelia. Seriously. Maybe just stop reading now. Why come here if I don’t know basic information such as…
Nick’s ankle is fused.
I didn’t know that.
My only excuse is that I swear Dr. Standard never used the word fused to describe Nick. Confused yet? I certainly am.
Dr. S basically said Nick’s ankle is very typical for his type of fibular hemimelia. “His type” hmmm… I know it’s type 3 and I know there are subtypes but I have no idea which of those it is. I knew it was the type that needed the super ankle surgery. I knew that there were bone cuts and all kinds of things done in that surgery that I never cared to ask for details on. I have never claimed to understand that stuff. Thank goodness!
What I do know is that I usually referred to it as on the severe side. That was the type according to me. Severe or maybe I said moderate to severe. Because he’s done so well and we had options. In a way severe sounds like the worst. Nick isn’t the worst it could be. He had bones in his foot to work with.
Anyway the fact that I had to ask Dr. Standard if Nick’s ankle is considered fused felt really dumb. I write about fh here, I support other families through email and the Facebook group. They come to me for information. Like I know what I am talking about, meanwhile I missed this bit of info about my boy.
We have always focused more on what the result of what was being done would be. The last surgery Dr. Standard put Nick’s foot in a better position and he straightened out his tibia which had a bit of a bend still and lengthened to the point of Nick being even! Thats what that mega fixator did. That’s what I know. But I am thinking I missed something (since I didn’t think Nicks ankle was always considered fused or was that word just not used?).
It also doesn’t matter. Nick has what he has. It is what it is. His fused ankle is working for him. He has a stiff but stable joint. I knew that already. He has no pain. He walks and runs and swims. He talks about trying new things. He does not feel limited by this fused ankle. Fused sounds like a bad word at times in the fh groups… “It might have to be fused”, “Better to amputate than be fused”, and so on but it’s not a failure and not a bad word and just because I am using it to describe Nick now doesn’t actually change anything.
Except now I can tell parents who fear fusion that it’s just fine! Nick is fused and fancy free. Nicholas will likely tell me tomorrow “I bet fused and fancy free sounded cooler in your head than it did out loud”. And I will tell him it doesn’t matter cause I don’t care about cool and since my street cred is gone already, I’ve got nothing to loose.
On March 23rd the first Fibular Hemimelia Potluck was held at Hackerman Patz house in Baltimore. On of the moms from our Facebook group planned it and several families came. There was even mom with a new little baby with fh! We also enjoyed the company of some of the families who were staying at the house. Having so many kids with differences together kid of made it so that no one was different at all, if that makes sense. Of course we also had siblings of kids with limb differences and they fit in just fine too!
My favorite moment was when Nicholas and another little girl pulled out their legs to compare. It felt so great for me to see these legs, different from each other but also so similar. Most people are surprised by the sight of Nick’s leg. But not this crowd!
Sitting around a table chatting with parents who absolutely understand what you have been through is awesome! I think there were 6 fibular hemimelia families altogether. In addition to the newborn there were two little ones, one in an external fixator and one having just had his taken off. Then there were the kids who had had a fixator or a few!
I loved meeting families in person that I had known on line for a while. Some folks we had met a few times already and it is always a joy to see them and their children too. One family we had met at the RIAO and saw at Sinai when Nick had his last surgery and their son had his fixator put on. Now this sweet little guy was in a cast. Thats another rough adjustment in many ways but seeing him and his parents post fixator was great. It is a long road in so many ways but it’s special to see families on the journey you have been on. To see them at all stages of treatment offering each other encouragement or just the listening ear of someone who has been there was amazing. It is something we will be doing again for sure.
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.
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.
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.
Thanks for the awesome pic Aunt Tara!