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
This video, which was recorded last night, may seem silly but its message is heartfelt. Nicks eight plate removal surgery went well. He had his last dose of pain meds Saturday night before bed. Nick is free of metal, except for his braces and even those will come off in less than a month. He’s moving around tentatively but feeling well.
Nick was really calm before surgery and woke up calm. Hopefully we will be back in Baltimore soon for a replacement brace for the trial. Nick said it was helping and once it cracked he said the “push off” it gave him was gone. Good news really.
If I don’t write again, happy holidays and happy new year to all our readers and followers. It is a blessing to have Nicholas in your thoughts and prayers. It is a blessing to know writing this blog has helped others. For the new families, as always, please be encouraged! 13 surgeries down and Nick doesn’t feel like he has had a surgery filled life. He feels grateful! He thanked everyone he could on Friday, even me. “Thank you for bringing me mom”. As if I would have had it any other way.
Nicholas had a great check up at the RIAO today. Here’s the inside scoop:
By the looks of it Nick’s eight plate is doing exactly what it needs to. It may be hard to see but it is correcting the valgus quite nicely. It still amazes me that essentially Dr. Standard uses that little thing to guide the growth of Nicks bone to correct the knock knee which is a classic issue with fh. Valgus has become a familiar word to a ridiculous extent.
The plate will probably need to come out around Christmas/New Years. Not looking forward to another surgery but its quick and out patient and frankly I will be glad to have Nick free of metal, at least for a long while.
I also added close ups of Nick’s knees. His ligament addition from 2 years ago is still holding up great. I have recently read about parents and doctors being against using cadaver donations. Personally I would not hesitate to let Dr. Standard do it again. It has worked fine for Nicholas.
Right now Nicholas has a length difference of less than 3cm. Probably closer to 2cm which is pretty great. No lift for now still just the insert which has a lift on it of a centimeter and a half I think or maybe two. This is the stuff I should remember but don’t.
Maybe it’s because we get very caught up socializing at the RIAO. We chatted with 4 fibular hemimelia families today. It felt like a fibular hemimelia clinic. Well I chatted much more than Nick but he chatted some. We saw a family we had met when Nick was getting his first shoe in NYC so long ago. We met a family from the Facebook group and a family of RIAO regulars that we have seen several times at events like Save A Limb and camping with Dr. Standard. We also met a 10 year old who seemed pretty similar to Nicholas. Nick talked to him (not about fh) while I talked to his mom. There is nothing like discussing this journey with someone who understands! I cant believe I got to do it more than once today.
I think Nicholas will benefit from that type of connection as he gets older. I am already thinking of ways to connect the kids. The Fibular Hemimelia and Limb Lengthening Awareness Facebook group has been awesome for parents. I think the kids may need their own thing.
So that was our day. All good news. Visited the cafeteria. Lots of laughs. As illustrated in the pic below. Nicholas was showing how much he has grown by pretending to be small which of course is unnecessary but made us laugh.
Batman was at the RIAO today but Nick does not like guys in costumes so we avoided him. We don’t need super heroes with capes and cars, our rescues and our own little miracles come care of Dr. Standard.
With the summer of the “normal kid break” and the 7 screw plate coming to an end I am realizing just how stressful this has been and continues to be. Nicholas had a great visit with Dr. Standard yesterday. His arm looked well enough to leave the cast off and just get a splint. His leg was healed enough to go to 50% weight bearing. It’s a big step considering he has been hopping for what feels like the whole summer.
We’ve got to pick him up an additional splint to use while swimming! Swimming is going to feel so great. He can 100% weight bear in the pool. I can’t wait to see my boy moving freely and joyfully. Really can’t wait!
Comparing the Nick of this summer to the Nick of last summer I see a completely different kid. He has grown so much in so many ways. Physically he is like 20lbs heavier and so much taller. He’s almost up to my eyeballs! At nine years old that’s pretty tall. Emotionally he has matured as well. Maybe this is all normal. Since he’s my oldest this is all I know of mothering a nine year old.
This summer has stressed us all. Last night Nick started having pain in his arm which he said he felt where the break was. I was helping out on a web chat with Dr. Standard so I was able to let him know right then. Basically he told me to give him ibuprofen round the clock for a few days but if the pain persisted to call him tomorrow (meaning today).It was a hard night. Pain would have been ok I am sure but pain right where the bone broke frightened me. Nick and I were both up past midnight.
Today it seems that the pain only happens when he bends his arm and it is not only where the break was. His elbow was hurting today and we are thinking some of the pain is in his wrist. That would be normal. He’s not moved his wrist or elbow in like 6 weeks! But nothing about a broken arm feels normal to any of us. Nick is keyed up because one something goes wrong it is easy to imagine wrong stuff will continue!
At least Nick’s leg looked great on the films and it has not caused any pain. My one worry on that front is that when Nick started to put weight on it while using the walker he seems to turn his foot totally out to the side! UGH Not what we want to see. Yesterday it seemed like Dr. Standard had some concerns about Nicks knee but we wont know anything till we can do a standing x-ray at his next appointment in a month. Lengthening is a big strain on the his knee (his super knee surgery was in June ’11) and I imagine all the rest has been a strain as well. I am hoping he wont need another 8 plate or any other kind of intervention for a while but really hoping is silly. It is what it is already. It will be what it will be.
The fact is we planned this last lengthening when we did for 3 reasons. 1. Nick’s foot began to hurt. 2. Steven was loosing his job and we only had insurance for a few more months. 3. We wanted Nick to be done by summer time or at least by midsummer.
Reason number 3 was not so realistic. We did our best to make it happen and then life happened. Nick said to me “Mom you promised this wouldn’t be a bummer summer and it was”. Nothing SUCKS more than hearing that. At least I pointed out that it is not over yet and as home-schoolers our summer can continue!
We’re hoping to move to less stressed and by next month to more weight bearing. As hard as it has all been everything is ok. This all could have been much worse. We still have the best doctor and team looking after Nicks bones! Here we thought it was just the leg!
Yesterday was a great day at the RIAO. Batman was there. Truthfully my kids are not so much into Batman but it created a really fun vibe. Personally it made me happy to see all the happy kids and the hard working RIAO folks watching the happy kids. Nick was glad to get into the cast room for removal but when it came time to do it he was scared. Melinda the tech was so patient with him. She always is and we’ve spent a lot of our RIAO time with her this summer but this was unusual for Nick to be so upset yet she was easy going and got it done.
Then Nick was scared to get off the bed to go to xray and the tech said (I wish I could remember his name he is the least chatty guy but great all the same) “That’s ok I’ll just wheel him over”. Another instance of patience and kindness making all the difference. I was just not feeling calm myself and it was nice to not have to be the one to figure it all out and make it all ok.
So now we make sure Nick is not more than 50% weight bearing. We hope the arm pain goes away. We try to keep the arm safe. Maybe most importantly we try to have fun and find some cool water and swim. And of course focus on how darn lucky we are in so many ways. All this bone business might have made a bummer summer but we tried our best to make the most of it, and it was all fixable, and Nick still grew 6cm of new bone in his right leg. Even when it kind of fell apart he didn’t loose any of the length he worked so hard for.
The truth is Dr. Standard preserved the length. I don’t think that was a guarantee. At least from what I have read of others experiences with other doctors. Perspective is so valuable. I am trying to teach it to Nick in the kindest way possible. Not just to be happy because it could have been worse or because he’s better off than others but to look at how far he’s come. From my perspective it never ceases to amaze and my gratitude is always present (at least to some extent) even during our first and hopefully last bummer summer!
Some days I really can’t be positive. So I keep quiet. It was a rainy day anyway. No need to venture out into the world which is good because I happen to be pretty annoyed at the world. I am just tired of Nick’s summers being so surgery filled. Last year on June 17th (his baby sisters first birthday) it was the knee. This year on June 22nd (my birthday) it will be fixator removal. I could add previous surgeries to this list but you get the picture.
As much as this is a surgery to be celebrated it is hard because we have no idea how he will feel after it. He might now want to walk for a while. The rod could cause him pain. Who knows! I just want Nick to be able to relax and just be a kid for a while. A really long while!
I also sometimes realize how much it impacts the other kids. We wont be going to amusement parks until Nick can go on rides. Would it be more fair to take the other kids and leave Nick behind? I don’t think so. Is it the end of the world not to go to amusement parks? No but when I think of how few times we really have gone it is kinda sad. There are other things I don’t do because it is hard with 4 kids (and really it’s just hard cause one is in a fixator and one is about to turn 2). The kids also have fifth disease and the rash from it seems to be gone until they are out in the sun and then it is red and itchy for a while after.
I guess we’re home bound and a little stir crazy. I took them to Target yesterday and the best part was that I could get them all in one cart. People found the sight of us quite amusing. Big kids, little kid, baby and stuff all in one cart. I counted pushing it around as a workout for me.
I think the moving factor is changing this summer too. We’re in a kind of limbo and I am tired of it. So really I am just complaining which is a waste of time and energy considering the kids are asleep and I could be asleep. Plus I realize I have much to be grateful for. I just wish this summer was easier for my boy and I guess the rest of us too.
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!
That’s about as true as quotes get, at least to me. It was posted on Facebook by another Super Mom. Super Moms are moms of kids with Fibular hemimelia who have gone through the super surgeries (super hip, super knee, super ankle and yes these are technical names for surgeries and the Super Mom moniker came from the Super Doc himself: Dr. Standard). There are so many families of children with limb differences who inspire me. We’re a unique group. We have tough choices to make. Choices most parents couldn’t dream of making. If you asked me when I was pregnant if I could imagine having to choose between amputation and complicated limb reconstruction surgeries I wouldnt have been able to fathom it and yet…I did. Many parents do.
We made the choice over eight years ago to preserve Nick’s limb. Even if it would not function as well as a prosthesis in his case. I wasn’t really worried about Nick being an athlete. We felt it would be wrong to amputate a functional foot. I still feel that way but I am now questioning how functional Nick’s foot will be. For the first time since making the choice we are questioning it. More specifically Steven and I are worried about Nick’s ankle. Steven’s point is “If eight years old and eighty something pounds is too much for his ankle, how will it handle carrying 200 plus pounds into adulthood?”
When I go on web chats and chat on Facebook and even return messages from readers worried about their children’s future with FH it has never been difficult for me to be supportive and positive. I don’t doubt or regret any of the advice I have given or what I have shared. But the fact is that almost or maybe every time we’re talking about cases much less sever than Nick. Maybe with the exception of bilateral Fibular Hemimelia but that’s very different in my opinion. I wish there was a mother I could contact, who has a child with FH as sever or more so that Nick so she could tell me it will all be ok… his foot will function well even though he’ll be a great big guy… he won’t be in constant pain. I suppose Nicholas having pain not related to surgery, that is interfering with his daily life for the first time ever is really throwing us. Maybe we’ve been naive? Probably so.
I need to know that Nicholas’s ankle will last. At least long enough for there to be some advancements in medicine so he could have other options. I need to know that this next reconstruction will work. I want so much for Nicholas to be able to go longer between surgeries! This is simply not a process that is compatible with doubt. I need my faith back.
Steven and I as parents have to be strong enough to ask all of this of Dr. Standard and trust that together we can make sure Nicholas has the best possible outcome. Maybe we have to be strong enough to face the fact that for Nick there are no easy answers, no perfect solutions. Nicholas was not born with mild Fibular Hemimelia, or even moderate Fibular Hemimelia, his case is pretty sever. The outcome we need is a functional foot with a stable ankle that can handle the big guy physique Nick’s already growing into.
It’s time to make a decision we made once and have to be strong enough to make again. It’s the only choice we have.
Nick began 2nd grade last week. We got him a simpler brace to wear to school thinking both recess and gym probably warrant some extra protection. For a boy without much interest in organized sports he does play hard! Kick ball was big last year and he obviously kicks with his right leg. Thank goodness he had surgery early in summer. He is currently free of limitations.
On the way home from school today he said “Everyone knows me because of my leg. I don’t hide that one leg is smaller than the other. It makes me famous. I am the only kid in my school with Fibular Hemimelia”. Charlotte then told him that he might not be and that there was a kid with a cast on her arm. Nick’s response was something like ‘seriously, that’s not the same at all’. It was a fun conversation mostly between them but of course it made me smile. I do worry though that at some point someone will tell him that he is not famous. We’ll have to deal with that if it happens. For now he’s willing to sign autographs anytime after school… Just kidding!
On a serious note, while we have had some fabulous family support in the fundraising department, we’ve not had much success otherwise. Giving shirts away for donations has not helped. I’ve got a lot if t-shirts! Nick is so into fundraising this year. He understands that some kids don’t have the option of keeping their leg because they dint have insurance or enough money. It probably helps that I took the kids to a rally against needless health insurance cost increases for low income and special needs folks! Nicholas held up a sign about how families need affordable health care. Maybe I wrote about this already but I am so proud that we were there. We were maybe 1/2 the rally but that’s not important. It taught the kids that we need to stand up for others and that we can make a difference.
So please consider donating to the No Fibula No Problem team! I’ll be posting a link. Please share it! Donations don’t have to be big!! Show your support for Nick and all kids with limb differences. It is not easy to be different. Nick has his down moments but they are just moments because he has received such great care at Sinai because we have insurance that covers his surgeries. He gets what he needs physically. We’re better able to support him because we don’t have looming hospital bills!
I am so proud of Nicholas! So lucky to be his mom! My life is beautiful because of him and my soul is stronger because of what we have gone through together. Fibula Hemimelia is his journey but I’m doing my best to be beside him and make sure he has what he needs and has the best chance to live his life how he chooses. I wish all those with limb differences had options! Even if amputation is the best road to take, kids still need access to experienced doctors. Parents need to be able to explore options so they know they’ve made the best informed choice for their child. Donating to save a limb will help that happen and so much more! It’s been a hard year for many but please consider sharing the link and giving a little. Skip the morning latte and save a limb instead!
Nicholas and I had quite an adventure getting to the RIAO yesterday! I won’t even go into details on our crazy long ride and then a bit of a long wait when we got there. All told we left home at noon and saw Dr. Standard after 7pm. But we really don’t care about that. All that matters is that Nick’s knee is great. Dr. Standard at one point, told Nicholas that he had strung up his knee and then he played it like a guitar. Nick and Dr. S have such a great rapport.
The strung up knee works. Nicholas is feeling great. It is still a little loose but as Nick grows it will tighten itself. That sounds like some magic stringing if you ask me.
Since Nick turned 8 a few weeks ago I could not help but think back to the first time we were at the RIAO with our new little baby. I always want to thank everyone there for everything but never seem to get to or at least not enough. I can not imagine going through this with another doctor or team. Eight years later I can say that I have no regrets regarding the course we chose for Nicholas.
With another surgery done I could not help but ask about what’s next. As crazy as it sounds Nick could be ready for another lengthening in as little as a year. I am hoping we can push that to two years but his discrepancy is already 6cm again which is about what it was before the last surgery I think.
On the plus side it seems that Nick’s ankle won’t need more work. It is holding up great. Dr. S will adjust Nick’s heel though. Right now it is kind of high and does not really function as it should, making his foot hurt in the middle sometimes when he has been walking a lot. Dr.Standard also talked about some other options like using an internal rod for lengthening the femur! I really did not want femur lengthening to be on the horizon for Nick but internal is a whole other thing. Worthy of it’s own post one of these days.
Nick also told me that he does not want the surgery that will make him shorter. He said he would rather have his fixator on longer because he can take it. I told him that that would be between him and Dr. Standard. I wonder if once he is in a fixator again he will reconsider. Who knows! For now things are just fine. Next appointment will be in 6 months although we’ll see the RIAO crowd at Save-A-Limb in October. I’ll post our fundraising link soon. We created a team that we are hoping other FH families will join. Individual pages can be created under the No Fibula No Problem team page. I hope some of you will consider donating or joining our team or coming to the ride! We’ve not missed a Save-A-Limb Ride yet!
We’ve been too busy to write. I hate to have to recap but I think it’s worth it in this case. Nick’s post surgery follow up with Dr. Standard went great. His cast was removed and he got a script for a knee brace that would immobilize his knee when needed but also had a dial to adjust the range of motion possible. It was. Relief to know that big blue’s days were numbered but we would have to go to a prosthetics and orthotics place which would have to order the brace so it could be a while.
Fortunately that was not the case. The RIAO called Maryland Prosthetics and although they said we’d have to wait they could see Nick that day. When we got there we actually did not have to wait and we had a great surprise. Apparently a brace had been ordered for Nick before his surgery and the gentleman man at Maryland prosthetics had it delivered to his home the Saturday after Nicks surgery so that he could bring I t tows at Sinai. Since Nick got big blue that was cancelled but they still had that brace so Nick got same day service! This was so wonderful. I swear I almost cried. That giant cast was no fun for Nick and with the brace he would be able to go in the pool and take it off when relaxing. The people at Maryland Prosthetics were exceedingly kind and I know we’ll be going there for any needs in the future. I might not have their name right but I’ll correct that later if needed.
I’d like to report that it’s all been sunshine and rainbows since then but that’s not exactly true. Nick’s not loved the brace. On the hot days it’s been pretty hard to get him to keep it on. That’s the problem with something removable. At the start it bothered his stitches some and after a while it just seemed to bother him. Nick is supposed to wear it when he sleeps but his dad told him a few days ago that he did not have to. I could not believe it. I always follow Dr.Standards instructions and was so mad at Steven. Nick had an appointment scheduled for the 25th of July that we had to cancel because we were in NY, Steven had to go to Delaware for work and I did not feel well enough to drive from NY to MD with 5 kids on my own. So I think Steven was thinking that by now Dr. S would have let him wear it less but really I don’t like to assume anything and I will be very upset if anything is amiss with Nick’s knee because Steven thought he knew better. We’re going to MD next week so we’ll know soon enough. There’s more to share but I’ve got a cranky one year old to tend to.