Last night the RIAO docs held a web chat specifically on the PRECICE device they developed for internal lengthening. The original physician development team consisted of Dr. Standard, Dr. Herzenberg and Dr. Green. For some more information about the device visit here.
I have written about it before and it is a huge break through. I am so grateful our children have doctors who are also dreamers. You’d have to be a dreamer to come up with such things! Nicholas is very lucky his last two lengthening surgeries will be with the PRECICE. Here is some info from last night’s chat to help determine wether/when it will be an option for your child.
External fixators will still remain a reality for fibular hemimelia treatment. This sounds like bad news to new parents wanting their child to benefit from the latest technology, however the external fixator felt like a miracle to us when we saw what it did for Nick’s leg (it was much scarier before it was on Nick’s leg compared to after). Nick had three lengthening surgeries using Taylor Spacial Frames and I remain grateful for that technology!!! While not easy, it is very doable.
Wether internal or external, these devices enable our children to maximize the function of the limbs they were born with. They bring my son closer to the dream I have had for him his whole life, to hop out of bed at maturity with two feet hitting the floor… To feel the sand between all of his toes… I know that he would be ok without these things but I am so grateful, that so far, he does not have to be.
So for the last 24 hours I have been doing some typical mom things, shopping for Nicks birthday presents and posting cute pics of my boy on Facebook. Maybe less typical was the photo and post I shared on the Fibular Hemimelia and Limb Lengthening Awareness group. In the photo Nick is about 18 months old and he’s standing without his shoes on. His first pair of shoes had a pretty big lift. The right shoe was more of a boot. It came up to his knee but it stayed on. That’s what mattered.
I shared the following:
Nicholas is 10 today! Here is a pic from right before his first surgery. He was walking without a lift as well as with. Nick is as fantastic, laid back, sweet, fun, bright and sparkling as he was then. I was so worried that surgery would take some of that away. I can say with 100% certainty that even though he has had more surgeries than birthdays, surgery has taken nothing permanent or lasting from him. It has given him a straight and long leg, a stable foot and knee, and compassion, confidence, I could go on. Anyway point is my kid is super fabulous and I feel like the luckiest mom in the world!
The interesting thing to me is that other than reading him birthday posts with good wishes, and staring a virtual 5k which I will add a link and photos about soon) fibular hemimelia hasn’t come up today. At least for Nick. For me I can’t help but remember the fear I felt in the beginning. That’s why I shared what I did with the group. I just want them to know their babies will be ok.
I started this blog about 4 years ago. In my first post I wrote that I wish I knew 6 years ago that Nick really would be ok. Well I wish I knew 4 years ago that Nick would be done with external fixator’s by age 8! The last one came off when he was still 8!!!
It’s been Nicks day 100% but I couldn’t help but reflect on my 10 years as a mom. And reflecting for me means writing so here it is.
Before I became a Mom
I didn’t know what it meant
I didn’t know how lucky I was
Fortune is relative.
You wouldn’t want to take my place
or walk in my shoes
watching my son walk in his.
I don’t blame you for not knowing
That “normal” is relative
That helping others heals.
That finding meaning
doesn’t make it all ok, but
it can make you feel better.
I didn’t know my heart could break
over and over
and then mend
again and again.
I didn’t know I would need to be reminded to breath.
That perfection is in the moment.
That kindness kind of is everything.
That’s not in the the baby books and you don’t need to be a mom to gain this knowing.
But I did.
Now that Nick is without restrictions it reminds me of how far he has come to get here. I decided to make a collage and when I was done I decided to make another. The problem with the first is that I felt like it was over fixator focused. Well not just fixator but surgery. There were so many moments in between.
Still even those surgery moments had a lot of joy. Dr. Standard did an amazing job with Nick’s leg. When the bone collapsed he saved the length. When we needed him he was always there. I didn’t take more than the one picture of him with Nick. Strange but I guess we were always preoccupied when he was around.
Nicholas and I had to work hard sometimes to make the most of it (one of our motto’s), but we so did. We laughed 1,000,000 times more than cried. He was up and moving more than not. He was in good spirits more than down. Even when we had to say “this sucks” we laughed about that.
Fibular Hemimelia (and other dramas of course) defined the last year for me. They took over. No denying it. But fibular hemimelia has never defined my boy. As you can see above and below it’s what you make of it. A fixator can be an air guitar, a hospital can be a haven, siblings can be saviors, bubbles can be a beard, a knee can be a monkey, a son can be a star and no fibula can be no problem.
There are Tequila of the Month Club’s. Maybe you knew. I didn’t. A few weeks ago when I was telling a friend about Nick’s knee troubles she said something like “Girl you need a tequila of the month club”. The freaking stress! She’s a good enough friend to understand it and probably see it on my face. Yes it was great news that Nick’s ligament was ok but knowing another surgery was coming was also a bit of a WTF moment. I am just being honest.
So I have found myself, chuckling to myself, thinking of a tequila of the month club. I don’t know why I find this thought so amusing. But today I stopped laughing because it really felt like a good day to sign up.
My boy has had fours surgeries this year already and more drama than any nine year old boy needs. And it continues. Yesterday or the day before his leg began to hurt when weight bearing. Then he was having a burning feeling (occasionally) in the area where it hurt. This all happened to be happening in a deep tract of half pin scars. Sometimes his leg just felt weird when he walked and sometimes he was, and is still, wincing in pain.
Nick thought it was the old pin sites and it likely is. After posting about it on Fibular Hemimelia and Limb Lengthening Awareness it seemed that the logical explanation was adhesions from the scar tissue. We figured this out thanks to a handful of folks posting about it and sharing pics and stories. I love love love that group! Still the realization came that this would require a surgical fix. Yes it’s fixable but it’s a surgical fix. In less severe cases massage and such can help. Maybe if I’d been massaging and such all along it wouldn’t be this bad.
Talking to Allison from the RIAO today confirmed our Facebook assisted diagnosis. Let me point out here that google was little help with this one. I pride myself on being a pretty good google doctor. I have diagnosed all kind of things but this was tricky. Allison did say massage helps sometimes but she remembered that Nicholas does have some significant adhesions and she didn’t think it would really help much but it wouldn’t hurt to try. She suggested ice and heat as well (possibly alternating) and I asked if I could give him ibuprofen which of course I can. Nick is so resistant to pain medications of all kinds. Anyway I asked if this could be taken care of with the knee surgery (eight plate part two) thats coming and she said yes. She will talk to Dr. Standard about it and I think we are scheduling it for early January. Nick has a clinic appointment on a Thursday so surgery can be the next day.
So now I am sad and tired. I know there are so many much harder things and I know we are so lucky to have the RIAO and Dr. Standard, and access to excellent care in general, and for Nick to have had so many successful surgeries, and supportive family and friends, and a healthy family in general but… SURGERY SUCKS. Telling my kid he would be having surgery in a month super sucks! He was of course upset. Nick had wanted to put off the knee business as long as possible and when I had previously suggested a preemptive plan for January he had resisted. And yet by the end of our conversation he was asking if he could please stay at Sinai over night. We do a good job looking on the bright side and Sinai sleepovers actually have been pretty fun in their own way. And I know he’d love to get back to the playroom!
I don’t know if I have written about this before but I have had this crazy fear that me sharing all this about Nicholas would end up reading like a cautionary tale. He’s had so many surgeries. Every time a fh parent asks me how many I feel like they are thinking they don’t want this for their kid. Heck I don’t want this for their kid or my kid! But number of surgeries and even the unfortunate reality that they seem to be getting closer together does not mean Nick’s not actually doing well. 17 cm’s of new bone and mostly stable joints is no small thing. Complications happen. Extra surgeries happen and life keeps happening all the while.
A few weeks ago Nick was running and playing and pretty “normal”…. icky word but I can’t avoid it. He really was just being a kid with two legs of almost the same length, living his life. Kinda dreamy actually! I know he will get there again and hopefully have that few year gap before additional surgeries that we’ve been counting on but there’s no way to know what will be.
Emotionally today felt like a floor kind of day. Still I perk up for the kids as much as I can and hug and comfort Nick but today I had to peel my heart off the floor to do so. And sadly tequila will not be the reason I need to be peeled off the floor in the future because in the sate of Delaware you cant do the mail order alcohol thing! That sucks too.
Nick’s leg is healed. His arm is healed too. In the words of Dr.Standards PA Allison, Nicholas is “super healed”.
No more braces or boots!
His right foot even grew too big for his summer shoes. I can’t remember his right foot ever outgrowing a shoe before his left. It’s pretty amazing.
It was a happy RIAO visit… my boy didn’t want to leave. He was enjoying the cable tv and he made another friend with a broken arm. I guess it’s not such a coincidence at an orthopedic clinic but it’s funny to me. Nick was a little sad not to get to see Dr.S (he was in surgery) but he said “I really like Allison. I mean I like her like a friend”. I think he thought I thought he meant romantically. LOL
I have waited for this day since January when the mega fixator was put on. I have dreamed of hearing that the bone was finally healed and it’s here. Nicholas is so happy. He was running down the hall at the the RIAO.
Without the boot on his gait is off but it still feels funny to him to walk barefoot. We’ll give him time to adjust and get physical therapy down the road if needed.
I am listening to the kids playing and need to put them to bed but at the moment, in addition to feeling elated I am exhausted! The emotions of the day, the drive, it all wears me out. What a great reason to be super tired.
If I had the energy I would write a love note to the RIAO! I am already thinking of doing something special for the all the folks who saw Nick through this. It takes a village (and one wizard of a doctor of course). I can’t name you all but so many people helped us get through this (almost a full year of ups and downs).
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!
I wrote the poem below for Nick and read it to him this morning in honor of his 9th birthday! He even gave me permission to blog it, despite the fact that the Dora part embarrasses him. He did love Dora’s Pirate Adventure so much. In the PICU after his first surgery it made him smile when nothing else could!
For that Dora will always have my love and gratitude. She has traveled with me through my journey as a Mom. From hospitals to cars and home again, state to state, child to child. Dora’s a girl you can count on! In two languages no less!
If you’ve never written your child a poem I suggest you consider it. Nick got something in his eye that made him tear a bit while I was reading.
Little by little Nick’s leg is healing. All the pin sites are, which I guess are no longer pin sites are getting smaller. The only issue he is having is in moving his leg in one particular motion. I am thinking of calling Sinai today just to check and see if it is a problem or just something we need to work on with physical therapy.
The removal went so well. Having the rod put in and not getting a cast as worked out for Nick so far. He is still not full weight bearing and I am having trouble getting him to use the walker. He’s totally willing to use the wheelchair for longer walks but he really wants to be free.
It’s going to take some time before his walking is back to “normal”. I am not really sure what his normal will look like but so far it seems not to be hurting and thats all t he normal I need.
The kids started camp in our new neighborhood last week. There was a giant inflatable water slide for Nick and Charlotte’s group on their first day. Charlotte did not want to do it but Nicholas was so excited. Climbing to the top was really hard for him. Watching him was so emotional for me. It reminded me of the Miley Cyrus song “The Climb” that came out during Nicholas last lengthening. Nicholas took a really long time to climb up. There was a line of kids waiting behind him and none of the kids said anything. I really worried since they had to wait a much longer time for their turns and had less turns than the other group because of Nick but everyone was kind. If an kid complained I did not hear it. I think this really is a great neighborhood, if the kindness of the kids is any indication I feel certain it is a great neighborhood!
The best part was Nicholas and his cheers of pure joy as he went down! All the kids liked it but not screamed like he did. It almost made me cry! He was so happy. I was so scared and happy and proud. Nicholas is such a strong boy. None of this has been easy for him. Moving has complicated things as well but he still putting himself out there and trying.
He hasn’t gone to camp every day so I am not sure how often he will attend but I will be happy if he goes to some days. Yesterday there was not camp but there was a great celebration called Games on the Green, which was mostly races for all ages, some silly races and even dog races. Our crew really wasn’t into the competing but Christopher participated in a bicycle parade with his group from camp and Nick and Steven did the three legged race. They of course were not the fastest, certainly didn’t come close to winning but seeing them out there, seeing Nick just do it was the best. It was a clear sign to me that he is moving on and that the best thing possible for him. Leg lengthening and reconstruction for fibular hemimelia round three is almost completed. Our family made our move and we love our new community.
We’re moving on and it’s bittersweet in so many ways. We already miss friends and family in PA and we’ve only been gone a week. I’ll try to focus on the sweet, get the kids ready for camp and keep moving on.
Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!
Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.
Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!
When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.
Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!
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.