Back on his feet in no time (literally)!

Heard back from the RIAO 2x today. Apparently there are several things that can cause foot pain in “normal” feet in children and most are benign. Great news!

But today the foot pain was 100% gone. Nick walked around all day and then did his hour of swimming. He goes back to the Dr. Standard next month and since the pain is gone I see no reason to go see him sooner. At the next appointment I do plan on asking what are some of the benign things that can cause pain so I panic a little less next time.

I suppose I am lucky my kids have not had a lot of normal kid pains. Nick had the normal kid arm breaking last summer but all other pains have been related to fibular hemimelia I think. And aside from surgery induced pain my boy has rarely been in pain. (PLEASE LET THIS POST NOT SERVE AS A JINX OF SOME KIND).

Dancing on screen at the Delaware Children’s Museum

Since Nicholas was feeling better we made up for being in a lot yesterday by being out a lot today! The Delaware Children’s Museum is an activity filled place and my kids tried everything!

Even though Nick was a little big for those carts he did great! After the museum we went to a Greek Festival and had dinner and then there was swimming. Not the kid of day a kid in pain would enjoy. Thankfully ‘kid in pain’ is so not my kid! I feel awful for anyone who has to suffer and I feel for parents whose children have pain that cant easily be eliminated.

Pain and fh will be explored in my next post which I have been considering writing for a while now. For now I am happy to have a house full of tired and/or sleeping children! Nothing like a day out on their feet to wear them out!

This didn’t start out as a fibula hemimelia post and yet it seems to sneak in anyway…

So this year was our first and our last year homeschooling. At least that’s how it seems right now. Honestly I think it’s impossible to know for sure what the future holds. Homeschooling certainly taught me that.

The reasons I think it didn’t work for us are many. My kids really liked regular school. They had good experiences and great teachers. If we had started homeschooling with some anti-school fire in our bellies that might have changed things.

I also have to consider my motivation for doing it in the first place. For one thing moving, and some anxiety over that, was a factor. They went to a lovely school. Fear of the unknown and wanting to shelter the children was certainly a factor. In terms of education I think for the right family homeschooling can be a wonderful experience. I think you have to actually enjoy teaching for it to be a success (IMO). I know some of the homeschooling community will disagree but the ability to turn every day moments into enriching educational experiences involves teaching. Opening up a curriculum and making it come alive involves teaching. And if you are 100% unschooling (which Nicholas eagerly requested over and over) then thats something different altogether.

I realize I have been teaching my kids things for their entire lives but seriously it is not the same as teaching phonics or multiplication or even addition for that matter! We ended up switching to an online based curriculum in October and did that along with grade level work books and other things like plain old copy work just to improve their handwriting.

Trying to literally be everything all the time to my children was a lot though. Doing lessons with big kids while little kids were around was hard. Doing the regular mom stuff like keeping them from burning the house down and being teacher mommy was hard. The kids found my lessons boring and the computer lessons boring and they missed seeing the same kids every day. The routine of school had worked for them.

And the ultimate truth is I found it boring. I love my kids but I don’t really want to be their entire world. I know it doesn’t have to be this way but it’s how it felt for me. I think I jumped into it really trying to almost make it my “career”. I think I have been ready to work outside the home for a while but felt guilty about it. How could I choose to work if I don’t have to? Wouldn’t that make it seem like I don’t love and want my kids enough? Nick has surgeries (here’s where fh comes in) I need to be available for. Working would bring stress to everyone.

Well most of that isn’t true at all. I know lots of working moms who I think love their kids as much as I love mine. Wether they work because they choose to or because they have to. Nicks big surgeries are done for a long while. He’ll never have an external fixator again. Things will come up and he will have internal lengthening but truthfully lots of families work through surgeries and it all turns out ok. Their kids legs grow. They survive.

The true part is working would add stress. That is true. However my being fulfilled in another way will make me a better mom. If you are fulfilled by at home motherhood more power to you. Keep doing what works for you but for me it really doesn’t anymore. It actually wasn’t my plan. I wanted to be a psychologist. I graduated magna cum laude so I could apply to grad school. But life happened and grad school didn’t.

Back to schooling. The kids are excited to go back. Nick did express some anxiety today and this is where the fibular hemimelia comes in again. “I probably wont fit in because of my leg but then they’ll say ‘wow he’s had a lot of surgeries he must be a tough guy’. This time I’ll be more open minded. The last two years I just looked for someone like me [to be friends with]“.

Of course fibular hemimelia plays into my desire to shelter the kids. The truth is Nick has had moments where he has had to stand up for himself and he has done fine. Most kids will have these moments wether they have two fibulas or not. I have to remember my goal of providing so much love and acceptance at home that he is strong enough to handle what the outside world dishes out. I hope he is strong enough to come home and tell me when someone or something hurts his feelings, strong enough to allow himself to feel bad sometimes but to keep going. I hope that for all of my children.

In the end I do not feel like I am being the best mom I can be in the homeschooling mom role. A homeschooling mom I really admire asked me to consider what my ideal day would look like. She helped me to see that it was ok for me not to want to homeschool. She has fabulous kids that I adore. They are kind and smart and lovely. But the truth is she is a fierce mom who is doing what she wants to do. That has to factor in there somewhere. My fierce momma skills lie elsewhere.

I still think school sucks in some ways but now I know homeschooling does too. There is not a perfect or easy answer. This time it’s my turn to be strong enough to say this is not working and we are ready to make a change. If I follow my children’s example I know I’ll get there.

These photos are from mothers day 2011. When people hear that I have four children they very often say “That’s a handful” or some version of that. So I reply “It’s a happy handful”, which it really is most of the time.

Pushy, Judgmental, Know-It-All

I try to be nonjudgemental, not a know-it-all and not pushy, but sometimes I feel like I fail at some or all of that. When I hear about children with ankle and/or knee issues that have had lengthening but never had their joints addressed, I get upset (any doctor doing lengthening for fh today should know enough to take care of the joints as well. I know not every kid will need the surgeries Nick did but most will need some!). When I see things in photos that are so clearly wrong, I get upset. When I read about doctors telling parents that lengthening is ruled out because of total expected discrepancy or number of toes I get upset.

Yes I have a been there done that attitude sometimes but that’s because, as a parent, I have. I have been on countless web chats with the RIAO docs and had countless conversations about fh and read everything I can about fh and tried my best to support others the best way I can. But like I said sometimes I get upset.

When I get upset I type fast. I make a lot of typos (actually I am typo filled even when I am not upset… it’s the tiny iphone screen I swear!) and I sometimes sound like a pushy judgmental know-it-all. That is not what I want to be and I believe it does not serve parents at all.

The truth is there are parents who will and do choose to amputate a leg/foot just like Nicks. Even though lengthening and reconstruction are possible. It’s their choice and there’s no right or wrong. I also cant view their choice as a judgement of my choice.

It is upsetting however when the choice is made with inaccurate or outdated information.

The group and this blog are intended to be resources for parents and outlets for me (the blog) and all FH parents (the Facebook group).

I received an email this week from a new fh parent. One comment made was that my blog posts make it seem like Nick’s life has been chock full of doctors appointments and surgeries. The thing is, I post to the blog primarily when Nick has doctors appointments and surgeries. I don’t post much when things are just “normal” unless there is something on my mind or something going on in the group or just a limb related bit of news I want to share.

If you look at the time frame of posts you can see, I think, that Nick’s life is lived in between surgeries for massive amounts of time. Even during surgeries he played and lived and laughed! I post about the hard stuff usually. I probably do it to help myself make sense of it and so others who have been there or will be there will not feel alone.

This week I sent an apology email to a parent from the Facebook group. I made a comment that was more general than anything but it was in the comments of her post. She has a child who loves athletics and is having a hard time. I went on a rant about how athletics aren’t everything, every kid wont be Oscar Pistorius even if they have an amputation… blah… blah… blah! She never said she wanted to amputate her kids foot to make him a better athlete. My comment was pushy, know-it-all, and judgmental sounding. It wasn’t my intention but it was how it was received and that’s on me.

So I take a deep breath and a step back. I remind myself that it’s about support and caring and not doing what I think is best! I do not know it all. However if I do know more about fibular hemimelia than your child’s doctor you need to find a new doctor. I don’t know the difference between the calcaneus and the talus but the way I see it I don’t have to because Dr. Standard does. He’s got that part covered and actually knows it all.

Save-A-Limb fundraising begins!

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!

A Functional Foot

I mentioned in my last post that Nick’s foot should not need additional surgery or it wont need the surgery I totally thought it needed. It’s in a good position or maybe as good as it gets? From here on out the goal will be to solve any issues from the outside and not with surgery. Hmm new territory for us.

Along that vein Dr. Standard gave us a script for a shoe insert. The insert will make up some of his 2cm difference, provide some cushioning, and be a shoe filler. Nick will get a shoe a few sizes bigger than his foot. I am not sure about this. I heard from another family that their son did not like the shoe filler but Gary (who we met with yesterday at the Lawall AI duPont location) assured me that he could cut the filler off if Nick does not like it. Making an insert smaller is always an option.

I brought this x-ray with me so that Gary could understand Nick’s foot and Dr. Standard had said Gary could call him so that he could explain what Nick needed.

Gary didn’t need to see this and he didn’t need to talk to Dr. Standard. He seemed very confident that he knew what Nick needed. Nick has what they call a “rocker bottom” foot. It’s that middle bump that needs attention. The insert will make it so that all the weight is not all placed there. Nick’s foot did hurt on the bottom one day last week but other wise it has not hurt at all. I am hoping that this insert keeps it that way.

Nick and I actually had a fun afternoon at AI duPont. He said it did not seem like the same place we went to when he broke his arm (we had only been in the er and he really hated it that day lol). Yesterday we had snacks in the lobby and had a great time jumping and hopping on the multi color tile floor in the hallway. Nick said the next time someone breaks a bone we should play that game because it made waiting much more fun. I didn’t bother explaining that when his arm was broken he was in no condition to hop through the hospital.

I wasn’t sure if someone was going to tell us to stop the game. It was not a particularly busy hallway and it was mostly hospital staff around and it’s a children’s hospital. Why not have children (or more accurately mother and child or as Nick would say in our case child size mother and child) laughing and hopping through the halls. I am so grateful Nick could do that. One of the best parts of our hopping game was the smiles it elicited from people walking by. No one told us to stop. I had been in a rotten mood myself and the hopping really cured it. Movement can be magical in that way. I am not a mover by nature. I am like an object at rest that wants to stay at rest and I have always loved sitting still but I can’t deny that movement has huge benefits mood wise. Nick being able to move freely is the point isn’t it?

Back to the functional foot. All the lengthening in the world is pointless without a functional foot. I am so grateful Nick has one. There is no guarantee that it wont have issues in the future. As you can see from the drawing on the image above that middle point where he bears weight could be better… maybe could be shaved down some day where Dr. Standard drew that line. His heal would be better off if it weren’t so high as you can see by the arrows. I don’t know if that can be fixed. But for now the plan is just to work with what he’s got and if all that jumping and hopping yesterday is any indication then what he has is surely enough.

Two views of a year in review…

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.

Nick does not want to leave Sinai.

Another surgery done. Yesterday Dr. Standard and company put an eight plate in Nicks’s knee, took out the 7 screw plate from the summer and took care of some adhesions that were causing pain for Nick from time to time. I was super happy Nick had nurse Harriet with him. The sight of her is such a comfort to me and Chris Fisher was in surgery with him as well.

Having so many familiar and trusted people taking care of my boy is wonderful. Chris walked me out of the or when I left Nick asleep. It was nice that he did because I might have cried had I walked alone. Chatting a little was a nice distraction. We talked about how violent orthopedic surgery actually is and the fact that the equipment used is similar to what could be found out in our tool shed. Nick use to ask for details on what Dr. Standard was going to do. I never asked for too much info but I am sometimes curious. I imagine it being loud in the or with drills and such going. I guess it’s pretty gross to consider so I’ll stop now.

We are having a pretty nice morning. I am kind of leaning Nick’s way and not wanting to go home. Except I really, really miss my other three children. Other than that we could stay. We’ve got nurses making sure Nick is comfortable and ok and a lovely lunch menu to choose from and it’s quiet and there’s cable and we even slept pretty well last night.

Maybe we are too good at making the most of it? Still we’ve got to go. Nicholas does not need to stay. His pain is under control and his leg looks good (according to Brian one of Dr. Standards new residents). Brian is new to us but may not be terribly new. Hard to tell. He was great with Nick and we had an interesting chat about zombies which has given me a whole new perspective on them and the fact that they are not as altogether impossible as I had thought they were. Despite his sharing that unfortunate zombie info with me I liked him a lot.

Nicholas had asked Dr. Standard Thursday if he would have to do physical therapy and walk right away and Dr. Standard said no so we’re good to go and Nick was so relieved. Dr. S said Nick can continue to do things his own way at his own pace. It is great that Nick has that control and Dr. S knows him enough to know he’ll get moving when he’s ready.

We and a brief visit from a family with an adorable little 15month old in his first fixator. It was nice to get to chat with them. We had met over the summer during the arm break/leg healing phase. I remember so well when Nick was a baby and we were here for his first surgery. Nothing since has ever been as hard as that. I hope that talking to Nick and I helped some. It’s hard to be at the beginning but that little boy was so beautiful and eager to get down and move around! I am sure he’ll do great and god willing his mom and dad will look back like I do and feel that the hardest part is behind them too. The light at the end of the tunnel gets brighter with each surgery behind us and thankfully today it doesn’t feel like an oncoming train (thanks Gretchen for that reference from so many years ago on the yahoo group it’s so fitting I never forget it or the support you and so many others gave me).

“Mom, lets go talk about my surgery fears.”

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!!!!

Be Encouraged

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.

2012 Blog in review (Nick in review will come later)

The WordPress.com stats helper monkeys prepared a 2012 annual report for this blog.

Click here to see the complete report.