Tag: fibular hemimeila
No Fibula No Problem
A while back I wrote a post in which I questioned whether no fibula was really no problem. I coined this phrase at a time when it really was not a problem for Nicholas. It was true. And then it wasn’t.
But now, see for yourself.
Nick also did this course holding a small orange cone in the air the entire time… ok not the entire time. When he needed to swing he put it in his mouth (gross yes but kinda kick ass if you ask me). He did it a couple other ways and did other exercises too. My boy was BEAT by the end of todays training however he was also so freaking happy. A shower, hydration and rest really restored him (per Jared’s instructions) and by evening he was feeling GREAT.
Then we took the ferry back to Seattle.
Tomorrow is our last day. It’s hard to believe but as Ryan said today this is actually the the beginning.
Keep on beginning and failing. Each time you fail, start all over again, and you will grow stronger until you have accomplished a purpose – not the one you began with perhaps, but one you’ll be glad to remember. -Anne Sullivan
Miracle Work
Back at Hanger. I am in the lobby and Nick is in the gym. I don’t want to follow him around all day and I want to get some work done. He’s in the thick of his Miracle Work.
You might wonder what I mean by miracle work. Well for one I think the miracle is that there is something that will work. That someone (Ryan) created it. The miracle is being here having access to this device. Limb salvage isn’t new, though it is becoming more common. What happens after the salvage is less studied and deserves much more research.
Most of what I will share I learned form Ryan and Jared yesterday. When I described the ExoSym as like Nick getting a prosthetic without having to lose his leg, I really had no idea how right I was. The ExoSym will bypass the part of Nicks leg that does not work. While this is a bypass, it is not a shortcut. This means the rest of Nick’s body will have to work harder to accommodate it. The brace itself will help some without putting in the work but it wont be a Miracle, and it would cause Nick to suffer in the long term if he tried to let the brace do the job alone. The Miracle Work must be done in order to avoid this and get the best result. It is already helping but the full effect will take about six months of work.
Nick started yesterday with some exercises that showed him how to engage the muscles he will need to work to have his miracle. Here is a video:
This work and the information shared reminded of Reenee letting Nick know that he is the master of his universe. He is the one who will make this miracle work. He’s not opposed to, nor deterred by the work one bit. Me, I am exhausted watching him but so proud. So exceptionally proud and so grateful to be here getting him what he needs.
#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
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.
Yesterday, Today, Tomorrow
Yesterday we participated in Carerra Por El FH for the third time. It was created by an inspiring fibular hemimelia mom I have come to know and love. She and I both appreciate the fact that we would not know each other if we had not had children born with fibular hemimelia. It’s impossible for me to imagine any other life or any other child.
Speaking of that child, Nicholas is twelve years old today. He is an amazing young man. He has always been amazing. I believe he is still who he was the moment I met him, simply a beautiful soul.
I believe the same of all of my children. Motherhood has been the greatest blessing of my life. Some days can be monotonous. Days can run into one another, sometimes they are long and slow and sometimes they are full and fly. There is always someone who needs something.
I was reminded this week though of what a privilege it is to have been there for my kids, in countless ways, over countless days. Some mothers don’t get to have the everydayness of motherhood. Some mothers suffer the absence of their children in a way that my heart can hardly fathom. I attended an amazing event on Friday, the TEDX Wilmington Salon on Second Chances. Each and every talk given had a profound impact on me and made me think about the impact I can make in this world, the impact I have made, and what my second act might really look like. What a gift to even get to ponder such things!
As far as motherhood, my current and always and forever act goes, I sometimes wonder if I am doing enough or being enough, when life is pulling me in all kinds of directions. Especially now as I work to get my MSW and shift energy into dreams that do not include my children, at least at first glance.
This quote by Cheryl Strayed was shared by Elizabeth Gilbert on Facebook this week and I just love it and really needed it at the moment I saw it:
Gilbert and Strayed are both authors that I have found exceptionally inspiring! This quote helped me to feel good about the time and commitment I am giving to what I know will be my life’s work. Motherhood has been my life for twelve years. I wouldn’t change that for anything but I am so glad there are other mothers out there who serve as examples form me of being a mother, (because I do feel it is a matter of being), and working in the world out side the of our homes and families figuratively and literally.
I am so grateful for yesterday, today and tomorrow. All the moments that make up my motherhood journey, all the moments yet to come, and all that is the boy who made me a mom.
Nearing the finish line…
So if my memory is correct Nicholas has lengthened 4.2cm’s. The gap is pretty easy to see! He’s near the finish line, though there was a moment of confusion about what the finish line actually is. I think it’s 5cm. Dr. Standards PA thought even legs. We will just go back Monday and get new measurements and go from there.
I got to ask my question about the 8 plate not fixing Nick’s valgus and Chris basically said there are a few ways to fix it but there is time. I am choosing to let that worry go until I can chat with Dr. Standard about it in depth, some time down the road. For now things are going so well, why not focus on that.
Nicholas also had physical therapy to check in on how we are doing at home and the therapist was most impressed. His knee is at 95 degrees. Hip was a little tight but overall all is well and we don’t even necessarily have to go back as long as things keep going well. I think Steven should switch careers and become a physical therapist. He’s doing great, although he credits Nick. PT for lengthening is not an easy thing and it is vital. Mostly I would never suggest families do as we have done but we have and it was certainly harder when Nick was younger. DIY therapy is not for most people and if Nick had not continually improved his ROM we would have absolutely gone back to the pros more regularly.
So maybe one week left of lengthening, maybe Nick will go back to school next Tuesday. Maybe we can get to 5cm complication free… fingers crossed, thoughts and prayers requested, the finish line is near!
Physical Therapy Fun
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.
No Fibula No Problem 