Save-A-Limb through the years. The Curley’s have been at every one so far. We are so excited for 2013! Click the collage to get to Nick’s fundraising page!
Thats what Nick and I just did. We sat in my bed and I asked him what his fears were. He said the surgery itself and cause he wakes up with surgeons he does not recognize. He asked to see Dr. Standard after surgery this time but I am pretty sure Dr. S goes from operating room to operating room and cant exactly sit by Nick and wait for him to wake up ; ) Thats my job.
So without being able to take this fear away I asked Nick what he thinks we could do to help with fear and he said “think of ways to make the most of it!“. We came up with 10!
- We get to be together.
- Video games at the hospital!
- Getting to eat and drink whatever we want. (He has no idea that there are drinks I would want that I cant actually have at the hospital).
- The awesome hospital rooms. Spacious! Massive TV! Giant sleep chair for moms!
- Hackerman Patz!! Getting to stay across the street from Sinai the night before surgery is awesome and Nick loves it there.
- The snack vending machine at Hackerman Patz.
- Video games at Hackerman Patz.
- Getting to sleep as much as we want in the hospital (he has no idea that this is not at all true).
- Getting to play Minecraft with Charlotte even though we will be far away.
- Having his new kindle fire to use at the hospital and the hospitals wireless internet. I’ve been grateful for that one for a long time myself.
So that’s todays list. By the end of the list making Nicholas was tickling me and laughing and smiling and I was reminded of how insanely lucky I am to be the mother of this most amazing boy!!!!
People mostly come here looking for advice. Of course some kind friends and family like to check in on Nicholas but thats not where all the action comes from. It’s those parents of new born babies or expectant parents who heard something they never wished to hear.
I wanted to share the above which I saw on Facebook today because it is solid advice for anyone but when you are facing an unknown challenge, when you know you will have to choose a treatment for your child when none sounds particularly easy, when you are hurting it is easy to loose sight of the big picture.
The big picture is that life is too short to dwell in the details. I had planned on a post recapping the last year in terms of fibular hemimelia treatment but that serves no earthly purpose. If you want a recap you can look back and read old posts.
What I can say is that this was our hardest year. 2012 will not be missed. I wish I had spent more time looking past the hard moments to the finish line. It felt too far sometimes. There is nothing worse that seeing your child in pain and not being able to do something or having that something not work or just waiting for something to work. In those moments I would try to still myself and hold Nick and be at peace. Sounds crazy yes but hugging him full of tension would not have helped. Thankfully there were not too many moments like that but it is easy to get lost there.
Right now Nick is doing great. Great enough to be playing football outside with a friend and to run to another friends house to play (by himself!!!). These are the details I could stay in for a while but truth is even these are not the place to be. Nick will have another surgery this month to put a small plate in his knee and take the big plate out of his tibia (hopefully). I can’t hang my hat on my kid playing football but I can focus on the fact that through it all he is still my loving and happy boy. Through it all he has grown (oh my goodness has he grown) into an amazing boy.
The big picture for me includes a little picture I’ve had in my mind since we chose the lengthening road. Nick getting out of bed in the morning with his own two feet hitting the floor. Nothing more.
I know he would be ok without his leg. I love reading about all the kids who are doing amazing whatever treatment they have but for me that little picture is important. It’s his leg and he worked really hard in 2012 to keep it that way. His legs are still nearly even!
So please be encouraged. Even if you go back and read about how hard 2012 was in some ways it may turn out to have been a great year looking back. It’s too soon to tell. We’re still too close to it. I think Nick and I both learned that we are even tougher than we thought. Though he will be the first to say he’s actually soft on the inside. Of course I am too (we are so much alike) but maybe that softness is actually where the strength comes from.
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.
Anyway thanks George Carlin for “One tequila, two tequila, three tequila, floor.” I didn’t know that one was his till I googled it. At least google is still good for something!
“Thursday, we will discuss congenital deformities (e.g., fibular hemimelia, congenital femoral deficiency). The chat will start at 8:00 PM EST. To receive log in information, e-mail email@example.com and provide your name and a summary of what you would like to discuss.”
These web chats are an amazing opportunity to ask the Dr. Standard questions and to connect with other families. I’ll be there! If your new to the world of limb differences it is a wonderful opportunity.
I have dreaded writing on this blog. Sometimes it feels like every time I write something positive something bad happens. I know it’ silly but it worries me.
However I am taking a chance and writing anyway. Nick seems to be back to “normal”. Normal is not my favorite word anyway but still he is just living life like a regular kid. He’s walking and running. He’s going out to play with friends. He’s not in pain.
That’s the best kind of normal there is for us. Not in pain and moving freely. It’s good timing too because this weekend is the 7th annual save a limb ride. We have been there each year. We’ve not always rode or walked but we’ve been there. This year we will have a fibular hemimelia table. I am so excited to meet some of the families who I have known on line for months or in some cases years. This year will be so special because of this and because Nick had such a hard year and is doing so well now.
Another thing I have realized is that I have actually helped a lot of people by writing this blog and creating the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. We didn’t raise as much money as we wanted to this year (it was a hard year for us as a family) but we are working year round to support the fh families. I get multiple messages each week from folks looking for advice or support and I am always happy to help. I am so grateful to these families who reach out to me. Helping them has been so meaningful. Everyone likes to feel useful and it makes me feel very useful. I also appreciate all the appreciation! Reading about how I have helped someone warms my heart so much.
Nick has been though so much. This is all about him after all but it is actually about our whole family and me as a mom (that’s a lot of what I write about). Being able to make the most of what life gives us is something I am proud of. Being able to take it a step further and help others gives my life additional meaning. I don’t know how many families have been touched by this blog. I don’t even know how many I have emailed with but I know that I am thankful to them for reaching out to me. My life and my heart are fuller because if it. I believed this is something I am meant to be doing. Call it a calling or call it whatever you like. It is, next to parenting, the most important thing I have done with my life.
Check out the No Fibular No Problem Fundraising Page and please give if you can! You can help save limbs too!
So much on my mind as I type this. Nick has been having some random pain. It’s mostly gone. There is a hot patch on his leg. Basically right in the middle of his leg in an indent created by a few half pin scars it’s warm to the touch. Not swollen, not red, very slightly tender and warm. These things had me on the phone with Allison from the RIAO almost in a panic. Talking it out with her we both decided Nick was probably and justifiably hypersensitive after all he had been though. After I hung up with her I realized I was probably hypersensitive too.
All the excitement of the previous day created a kind of hangover and then to have Nick in pain created a bit of panic. Of course I was worried that there was an infection brewing or something equally horrible. My chest tightened. I became short with the kids. I ate 1/2 a pack of twizzlers in 3 minutes.
After talking to Allison I was calmer but still had this tightness in my chest. I am really worn out on worrying. Really. Nick is too in a way. He basically was insisting that we go to Dr. Standard even though I said he was fine because his point was “I wasn’t fine before and we didn’t know”.
He is right. We are dealing with the fear of the surprise surgery. Thinking all was well and done and then getting hit like a ton of bricks. Maybe we are in a similar place Nick and I.
Right now Nick is not to jump or run but he is still walking. Generally he’s got to take it easy. He was calmer today. There were some conversations on Facebook in the Fibular Hemimelia and Limb Lengthening Awareness group about the fact that it is “fibular hemimelia” but it’s really the tibia that sees all the action surgery wise. If someone has a fibula it essentially goes along for the ride. For whatever reason that stuck me as interesting.
When lengthening the tibia the fibula has to be cut and it is connected to the tibia. No pins and wires are in the fibula but it is pulled apart as well. Literally going along for the ride. Anyway sometimes it does not reconnect but for some people it is a non issue. It is ok to have two pieces of fibula not connected. For some people it is a problem which made me feel like Nick is kind of lucky to have no fibula to worry about at all. No Fibula No Problem.
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).
Tomorrow is Nick’s official post op visit at the RIAO. I don’t know if he’ll see Dr. Standard since it is not a regular clinic day but he’ll see Allison. It was about 3 weeks ago I think that we went on a random Wednesday because Nick started having pain in another area of his leg! He also had patchy, swollen, tender, redness so Allison prescribed and antibiotic. For the leg pain he got a big grey inflatable boot. Very fancy and did the job well.
The redness, swelling and pain on his skin was a bit scary because an infection of the skin could spread to the bone and the plate and if the plate had to be removed we had no idea what would happen. When I asked Allison she said “That’s when Dr. Standard works his magic”.
Ah yes the Dr. Standard magic. Sometimes I just have to take a deep breath and have faith. So far all has been well. The swelling was gone within 24 hours and so was most of the redness. His leg looks great, long and lovely really. He’s happy with homeschooling, making friends, living his life (albeit with a big boot on his leg and a hard splint on his arm) not much more I can ask for. If finally feels like we are actually moving on. I hate to even type it because you never know what the next x-ray will bring but Nick is walking without pain. That’s pretty great in and of itself!
Here’s a photo from this weekend. It was such a joy to be able to do something so simple as go to an amusement park. Watching him have fun was the best thing ever!
A little over due. I wanted to write about our recent vacation but I thought this Thank You we made for the RIAO says most of it!