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).

Tequila of the Month Club

Nick is proud the scars left behind after 11 surgeries!

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.

One tequila,

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.

Two tequila, 

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.

Three tequila,

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.

Floor.

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!

Oscar Pistorius was born with Fibular Hemimelia

Did you know that? Maybe not since most articles I have read don’t mention it. If you google “Oscar Pistorius Fibular Hemimelia” it does come up. I didn’t watch the Olympics so I don’t know if it was mentioned there either.

Some say he had an advantage despite scientific evidence otherwise. Prostetics have not yet advanced passed the ability of the human body. At least as far as my googling shows. If you’ve not got feet, and ankles, and calves you’ll have to use what you’ve got to make up for it, and that is quite a feat, carbon fiber springy legs or not. Still it’s really hard for me to look at this guy and think “disabled”.

When Oscar was born I doubt his family had any other option other than amputation. Even if they had options they might have still chosen amputation as many parents still do. There are kids on the various FH support groups with bilateral FH and prosthetics. I am sure they, and their parents have found a hero in Oscar Pistorius.

It’s a beautiful thing for a child to be able to look at their television and watch this amazing man, who is “like” them, run to the cheers of the world. I am thinking there will be kids asking for those amazing cheetah legs like crazy now. Most kids I’ve seen on the support groups don’t get those legs. I doubt most insurance would cover them. Which makes me wonder if Mr.Pistorius might be just the person to help these children get better prosthetics. Couldn’t an olympic athlete raise awareness and fundraise to an extent that most of us do not have the ability to.

Ahh… ability. We’re back at that again.

Oscar is quoted as saying “Being disabled doesnt have to be a disadvantage.” That sounds great and rings true but I can’t help but wish Fibular Hemimelia was mentioned more. I can’t help but wish he would use his fame to benefit children born like him who might never have access to those amazing prosthetics which enabled him to compete at the highest level possible. All kids with cheetah legs won’t all make it to the Olympics. But we’re not all born athletes wether we arrive with all the usual bones or not. He could raise awareness of FH in general and benefit all children born with limb defects.

Oscar Pistorius is an athlete. He is an athlete who was born with Fibular Hemimelia which was treated by amputating his legs below the knees. I suspect that if he was born with his fibulae in tact he would still be an athlete. If you took the time to look at his body beyond his legs I think you would see that this is true. He is an Olympic athlete and an inspiration and to be celebrated as such. He may not have entered the Olympics with an advantage but he sure does have one now and I hope he uses it.

From our families perspective it’s just not been that high on our radar. I don’t think it’s come up that much but last night I started to wonder. Nicholas woke up crying from a bad dream. In his dream he said he had a surgery on his leg but Dr.Standard couldn’t fix it and his leg fell off the operating table and he woke up with a prosthetic. As he told me this he was crying and holding onto his leg.

Nick has known for a long time that amputation was an option and for many the choice treatment for FH. Maybe having to have an extra surgery has made him scared and that influenced the dream. I don’t know really but what I do know is that Nicholas could not imagine a life without his leg. I know that even with an amputation and a cheetah leg Nicholas would not be an olympic athlete. It’s just not who he is.

I had a doctor (a pro lengthening doctor) tell me when we were choosing between amputation and lengthening that Nicholas would never run a marathon with his own leg but he could with a prosthetic. This doc didn’t think that was a reason to amputate. I didn’t either.

Oscar Pistorius is inspiring to me like anyone who is able to overcome and achieve greatness. For him the “No Fibula or rather No Fibulae, No Problem” title fits quite nicely. He’s just not going to be the guy my boy points to and identifies with. Even though he was born with Fibular Hemimelia, which you might not have known until you read this.

“no fibula” google image search results. Nick believes he is the most popular person without a fibula. I hope he’s not upset that Oscar is gaining on him. Kinda funny to see them side by side. Nick is still first though ; )

‎”You never know how strong you are until being strong is the only choice you have.”

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.

Everything is possible.

And nothing is certain! It’s life. It’s true. No one gets any guarantees and with Fibular Hemimelia, it’s even harder to predict what’s coming next.

It reminds me of the phrase “This, too, shall pass”. I sometimes remind myself and others that it applies to both the hard times and the easy. My last post “when nothing is certain, everything is possible” reminded me of “this, too, shall pass” because it also goes both ways. If everything is possible then everything you don’t want to happen is possible too!

Nicholas has had some foot pain on and off. We’ve known since his last leg lengthening and ankle reconstruction that his ankle would need further reconstruction. His heel obviously needs some work too. At Nick’s last visit with Dr. Standard his discrepancy was 6cm and Dr.S said we could start thinking about the next big surgery as early as next summer. In my head I thought, “no thanks let’s wait 2 years please, I’m not ready”. I likely did say that I hoped to wait 2 years. I am not shy about expressing my opinions on Nick’s course of treatment. I happen to think Dr. Standard likes it that way. We’re a team, along with several others but I feel like he and I make most of the choices. Steven has as much of a say as I do but I tend to be the one there having the conversations.

And yet my long term plans for Nick, lovingly called “the Mommy Plan” has to be revised or in reality it has been obliterated. Time for “the Standard Plan”, likely the plan all along in one form or another but thinking I had a plan and a good sense of the future served me well for quite a while!

Nick’s ankle and foot pain went from not so bad to so so bad. Nicholas as would not put any weight on his foot if he could avoid it. After a small bit of back and forth with the RIAO we just got in the car and headed down. When we arrived at the front desk I began to say “We don’t have an appointment. But we’re here to see Dr. Standards PA …”. I was delighted to be interrupted and hear “Nicholas Curley does have an apppointment with Dr. Standard”. Then my astonished response was “Right then thats what we’re here for”. So relieved! I had made some calls and not gotten a response but I felt this was an emergency. If a child even without Fibular Hemimelia, woke up unwilling to put weight on one of their feet, most parents would head to the er!

I didn’t think we would see Dr.Standard. I thought we would see Allison his PA, she would order x-rays, and bring them to Dr. Standard in the or. I know Tuesday is a big surgery day. I imagined her bringing them in and him looking over his shoulder like on Grey’s Anatomy, talking through his mask. There’s lots of time for imagination during the two hour drive to Baltimore.

I don’t know if tv like moments happened. As Nick and I hung out, just the two of us, in the children’s waiting room, Dr. Standard swept in with Allison. Relief! Even though I thought I was ok with him not seeing Nick I kind of wasn’t.

Thank goodness the x-rays did not reveal anything dramatic, no breaks and such. It seems the course of life of a so-so Fibular Hemimelia ankle is not altogether predictable. At the end of the summer Nicholas has a pretty significant growth spirt. He really filled out. He’s not chubby or anything he’s just tall and getting broad! Like his daddy! Taking after Steven while handsome and cute is great, tall and heavy is not making having Fibular Hemimelia any easier for Nick. His ankle might have been able to last a few more years as is if Nick were smaller but he’s 83lbs. It is what it is.

The current solution is a removable cast and then a shoe insert as soon as possible. The hope and plan is that the insert or, custom molded orthotic, will help and we can put off surgery. I thought the cast had taken care of things pretty well till this morning when Nick’s foot hurt even in the cast! I put some cotton In the bottom for extra cushion around his heel which was the current t problem area and that helped. Then I received a call from the school nurse. Nick was in pain and wanted to come home.

Me, four kids, one cast and a rainy morning heading into the elementary school office felt a like a lot. I think I am tired from yesterday. Nick on the other hand was so excited to go to school! The main reason being the elevator! His classroom is on the third floor. Way too many stairs for sure! We got to talk to the school nurse and she was so kind, really she always is, and very willing to help Nick be able to go to school safely. Have I mentioned that I love our school? I do.

I’ll have to write later about how we are evolving from the “Mommy Plan” to the “Standard Plan”. We may even have to take it a step further and consider the “Nicholas Plan”. He’s totally against having surgery during the summer. Who could blame him? Letting him have some control over this could really help him emotionally. Plus it is his leg and his foot therefor he may know better than all of us. After all everything is possible?

Good News Knee

On Monday Steven, Nicholas and Charlotte traveled to Baltimore for Nicks visit with Dr. Standard. I stayed home for 2 reasons… Baby Elizabeth Eileen is MISERABLE in the car and Christopher is having some serious success potty training and I figured a few hour in the car would not be helpful. So I had to wait by the phone for the news that….

Nicholas’ knee has improved on it’s own. In about 3 months he will go back to Dr. Standard and schedule a much simpler knee surgery than we had been planning on. Only one night in the hospital as opposed to 4! Small incisions as opposed to a large one!! And the eight plate will come out at the same time. One less surgery altogether as well! Really really amazing news. I am now praying that it stays this way but I will try to just be happy.

I almost had not realized that he had not complained about knee pain in a long time. When things are going good it is easy not to notice. Really we are all just so happy. Surgery is surgery and kinda stinks but really this is so much less scary to me now. So much easier to plan for the other kids too. Being away for days with a nursing baby is next to impossible and we need to be able to focus on Nicholas while we are there.

As much as I was a little sad to have to stay home… I was overjoyed at the news. Maybe I should stay home more often  : )

No Fibula, No Problem

On the limb differences chat at the moment and someone was looking for something to put on a t-shirt to fundraise for fh and it hit me ‘No Fibula, No Problem’. That’s the reality for Nicholas. He has no fibula on the right side and ok I guess it is a problem in that it requires treatment but he is still living and loving life without it.

First grade is awesome so far. Nicholas loves his teacher and his principal even told me tonight how impressed she is with how his leg is doing. He also stops to chat with her in the hall way. Not sure how many kids do that.

Nicholas has had some pain behind his knee but Dr. S has suggested we do some stretches at night. So I am not really worried about it so long as it stops. Otherwise we will be on our way back to Baltimore. We wont be going back till October unless something happens or this knee business continues.

Some seriously sad news… our local shoe hospital has closed it’s doors. This was an old fashion shoe guy who also happened to sell roasted peanuts but the important part was his lifts were awesome and cheap. Now we are paying over $100 for one shoe!!! Thank goodness Nicholas his happy with one pair.

I have not been on the fh support site or the fh Facebook group as much as I would like but school starting has made life so busy and the days go even faster than ever. I am going to put it on my calendar as a reminder to check the groups. Being there for others is so important to me. As a mom it means so much me to be able to use our experience in service to families new to this world of fh. The chats are just one awesome way to do it and of course asking questions real-time is great but the parent interaction and support is wonderful. And I love reading about the kids who are having surgery and doing do well, when I can remember chatting with their parents when they were babies, or receiving emails about newborns with a new diagnosis of fh. When I first came in contact with families with fixators it was life changing. Knowing that we were not alone meant more than I can say. By the way, if your reading this because your child has a diagnosis of fh, you’re not alone either! Come to chats, email, join groups, do whatever you can to get the support and answers you need.

Finally An Official Fixator Removal Date…and other musings

Today Nicholas and Steven went down to Baltimore for one last x-ray to make sure Nicholas’s bone is ready for removal and it is!  Dr. Standard was not sure if his bone was %100 healed but it is healed enough for removal. He wont know till they are in surgery and at that point he will determine what kind of cast Nicholas will have. His options are a full leg cast or a below knee removable cast. If the cast is below then knee and the and the bone is not fully healed it could cause a fracture. Steven tells me that Dr. Standard was not totally happy with the x-rays taken today and that is why he is not sure exactly what he will be doing with my boy’s leg.

Another unknown is whether he will put and 8 plate in Nick’s knee. Apparently his deformity can cause knock knee (also known as valgus) on the effected side and we always knew this was the case for Nicholas. We have discussed the 8 plate with Dr. Standard on several occasions so it is no surprise. I had kinda forgot about it though. For anyone interested the technical name for the procedure is a hemi-epiphysiodesis (sorta makes fibular hemimelia look easy doesn’t it). It means is that they will restrain one side of the growth plate with an implant shaped like the number eight. The other side will continue to grow and correct the deformity. The eight plate may be removed when Nicholas has his knee surgery or as an outpatient procedure. I guess it depends on how long it needs to be there.

Meanwhile Nicholas has been counting down leg washes for about a week and a half. For some reason we thought it was easier to count leg washes rather than days. Counting tonight there are four. I was kinda sad not to get to go to his appointment with him today, since I had not missed any related to this lengthening. With his last lengthening I missed many because I was crazy pregnant with Charlotte and then Charlotte was born and I was nursing so either way I could not go in with him for the x-rays. We have had such good times Nick and I, chatting during the drive, eating in the cafeteria, drawing on that paper they put on the exam tables, stillness contests during x-rays, making friends in the waiting area and countless other little moments all our own. It really is only fair that Steven get to have some moments too but Nicholas had always insisted that I take him. It seems to be a lot easier to remember the fun times when the light at the end of the tunnel is so close!  But honestly I think we made the most of out trips and our time. The 2 hour drive never really bothered Nick and I loved being able to give him one on one attention which can be really hard to do with 3 kids at home.

I know I will spend the next few days totally nervous. Not so much because of the surgery but more because I am worried that Nick will get sick before the surgery. With H1N1 hitting our area it is scary. If he is sick at all he can’t have surgery and for good reason but I would hate for him to have to stay in his fixator longer and be sick!   I am sure I am not the only one worrying about this and I really would love to keep him out of school till next week but I can’t let my anxiety take over. Nicholas would be really mad at me if I told him he could not go to school.

So this is it. Just a few days and lengthening number 2 will be done. I can’t believe it.  Sometimes it feels like it was just yesterday that I was handed that piece of paper that said ‘fibula hemimelia’. And yet here we are 6 years later.  I have to write it again because it is how I feel, I wish I knew 6 year ago that Nicholas really would be ok and that his leg would work so well for him! I would be lying if I said I didn’t sometimes wish this had never happened to him and that I’d never heard of fibular hemimelia. No parent wants to watch their child suffer in any way. And yet, and I never ever thought I would say this (and totally mean it) but I am beginning to believe more and more that things are as they are meant to be. The easy, the hard, and everything in between. Just as I felt the morning he was born, that I could not wish away fh because that would somehow be wishing away my boy, I still feel that today.

Last week he fell hard on his fixator and landed on a half pin really hard (these are the thick pins that go half way though and hold the fixator in place). He screamed in pain and I asked him if he needed the yucky medicine (as opposed to the standard Tylenol) but he said no. In just a few minutes he was ok so I figured he had not injured himself. That night there was a little blood around the 1/2 pin. Which is not uncommon for that particular pin anyway but during pin care Nicholas said “Mom you should take a picture of that pin site and share it with the moms on the web chats so they can tell their kids not to do what I did so they don’t get hurt”.

Today I saw the quote below and it really made me think. I could not have planned this life of mine if I had tried nor could I have planned Nicholas’s. No one plans birth defects for their child but these things happen. All I can say is that I have tried to do the best with the life that I have and more importantly I have tried to make the best life I could for Nicholas, give him the strongest possible foundation and all the love he could stand. Today I wouldn’t change a thing.

“We must be willing to let go of the life we’ve planned to have the life that is waiting for us.” E.M. Forester

Consolidation Continues

Another good clinic visit yesterday for Nicholas. His bone is almost healed!  But almost is not enough to take off the fixator. Consolidation is really a waiting game and it seems to go on it’s own schedule and not mine. Although Dr. Standard had said 7 months and if we stay on course it will be one day less than that, so I suppose consolidation is working on Dr.S’s schedule. Right now we have a tentative removal date for 10/23. We will not really know for sure till 10/19 when he gets one last xray. Nicholas was hoping to keep his fixator parts when it comes off but I told him that that is not likely.  He wanted to use it to build something and of course for general play.

I was really worried yesterday that Nicholas had another infection but Dr. Standard said I could wait and see a bit before starting the antibiotics. When he touched around the pin site there was no pain and no drainage and it was not as red as it looked last night at 9:30 when I started to worry about it. During pin care a tiny bit of goo was on one pin site and Nicholas and I thought it looked mostly yellow but a little green. I think we need better lighting for pin care. It is sometimes really hard to tell and we even use a flashlight.

Yesterday we waited longer than usual at the RIAO and I had all 3 kids with me so it was challenging. I brought lots of snacks and some play dough to keep them busy.  I feel bad for whoever has to clean the RIAO because we left a trail of Oreo cookie crumbs all through the place. I did the best I could to clean it up. Christopher was a crazy cookie face mess, I had cookie ground into the bottom of my shoes, and Charlotte and Nick may have been on a sugar high all day. Really next time I will bring less sugary snacks. How can I wonder why they are bouncing off the walls with all that junk food. In Baltimore they get to eat all the stuff we really avoid at home.

Most patients, like us don’t mind the wait because you know when it is your turn that Dr.S will stay and answer all your questions and not rush you through. I had thought that Nicholas’ ankle was going to need to be fused because it seemed to me to have moved over and I thought he had said something about it but when I asked him about it he said that his ankle is doing fine. I think the front of Nicholas’ foot leans a little to side and that distorts the view. He is also really walking with his foot turned out because he is trying not to bump the fixator into his left leg. That poor leg is usually covered in bruises but he never complains.

I met a mom who also has 3 kids but it is her youngest who has a limb issue. His name happened to be Christopher too. We talked a bit about what it was like from our different perspectives regarding limb issues and birth order. We also discussed how each parent takes on certain tasks with a child in a fixator, based on your strengths. I am the leg wash/pin care person and appointment maker and taker usually and Steven is in charge of struts, doing exercises and of course takes care of Charlotte and Chris when Nick and I go to Baltimore. It all gets done one way or anther and working as a team makes it go smoothly.

The day ended with another lively kids with limb length differences web chat. I think it was the 4th or 5th one. It is hard to keep them straight since I help with organizing the perthes group chat. They (the perthes group) are a really lovely and lively group of women and were the masterminds behind our awesome t-shirts that said “RIAO Where great limbs and hips are STANDARD” (in case you missed my save a limb post). Some people come back to the chat each month with more questions, some come without questions and end up with one after reading other’s questions. And then there is me mostly without questions but hoping to answer parent related stuff and logistical stuff . The chats have gotten pretty humorous at times. Like when Dr.Standard was describing the difference between a typical fh foot and a club foot.  He described a fh foot as sometimes being called reverse club foot (equinovalgus is the technical term but the reverse club foot thing was news to me) because the fh foot is usually pointing “down and out” and I had to giggle a bit thinking of Nick’s foot as ‘down and out’. Of course it no longer is! He also mentioned how the knee of a child with fh sometimes “pops and clicks”, which reminded me of how he once called Nicholas’ knee “loosey goosey”.  So we laughed a bit about the lingo which can sound silly but is accurate. Maybe some new parents reading this are thinking “how can you laugh about such this stuff”.  Maybe because at close to midnight after a long day I giggle at everything, maybe because the words really are stilly sounding and maybe it’s because laughter really is the best medicine (at least for the very tired and sometimes stressed mom of a famous fixator kid). How about all of the above.