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
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!

photoEven 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!


Fused and Fancy Free

I am about to loose any street cred I had regarding knowledge of fibular hemimelia. Seriously. Maybe just stop reading now. Why come here if I don’t know basic information such as…

Nick’s ankle is fused.

I didn’t know that.

My only excuse is that I swear Dr. Standard never used the word fused to describe Nick. Confused yet? I certainly am.

Dr. S basically said Nick’s ankle is very typical for his type of fibular hemimelia. “His type” hmmm… I know it’s type 3 and I know there are subtypes but I have no idea which of those it is. I knew it was the type that needed the super ankle surgery. I knew that there were bone cuts and all kinds of things done in that surgery that I never cared to ask for details on. I have never claimed to understand that stuff. Thank goodness! 

What I do know is that I usually referred to it as on the severe side. That was the type according to me. Severe or maybe I said moderate to severe. Because he’s done so well and we had options. In a way severe sounds like the worst. Nick isn’t the worst it could be. He had bones in his foot to work with.

Anyway the fact that I had to ask Dr. Standard if Nick’s ankle is considered fused felt really dumb. I write about fh here, I support other families through email and the Facebook group. They come to me for information. Like I know what I am talking about, meanwhile I missed this bit of info about my boy. 

We have always focused more on what the result of what was being done would be. The last surgery Dr. Standard put Nick’s foot in a better position and he straightened out his tibia which had a bit of a bend still and lengthened to the point of Nick being even! Thats what that mega fixator did. That’s what I know. But I am thinking I missed something (since I didn’t think Nicks ankle was always considered fused or was that word just not used?).

It also doesn’t matter. Nick has what he has. It is what it is. His fused ankle is working for him. He has a stiff but stable joint. I knew that already. He has no pain. He walks and runs and swims. He talks about trying new things. He does not feel limited by this fused ankle. Fused sounds like a bad word at times in the fh groups… “It might have to be fused”, “Better to amputate than be fused”, and so on but it’s not a failure and not a bad word and just because I am using it to describe Nick now doesn’t actually change anything. 

Except now I can tell parents who fear fusion that it’s just fine! Nick is fused and fancy free. Nicholas will likely tell me tomorrow “I bet fused and fancy free sounded cooler in your head than it did out loud”. And I will tell him it doesn’t matter cause I don’t care about cool and since my street cred is gone already, I’ve got nothing to loose.


17 centimeters

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!

Summers of Surgeries

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.

Fibular Hemimelia Before and After

I’ve been asked to provide some before and after photos of Nicholas. That’s kind of hard to do since at the moment he is in a kind of before situation. Being that he’s currently undergoing treatment. It was even hard to find great photos from between previous surgeries. It really reminds me of the fact that between surgeries we don’t pay a whole lot of attention to his leg.

I guess that is truer at some times than others. The fall was hard with Nick having random pain for the first time. Between surgeries one thing that always reminds us of fibular hemimelia is shoe shopping! That seems like it will never be easy. And getting shoe lifts, which either seems super easy or a real pain. Once we find someone who does a quality lift at an affordable price we pray they will stay in business.

Apparently though Nick does not need a lift right now! He’s walking with the walker but still reluctant to put weight on his right foot. I worry he is going hurt his left foot with all the work it’s doing! Still he’s not terribly active right now and now that the infection is under control we’ve got to encourage him more (I guess the swollen red infection pictures are a kind of before. I should take some nice afters to go with them). Steven is away and told Nick that if he takes a few steps each day he’ll take him to McD’s when he comes back.

This time when this fixator comes off I will be sure to take lots of awesome after photos. I hope it will be a few years before Nick will need another surgery. Though the way my boy grows it is hard to imagine going too long without another lengthening! Hopefully I will get to posting some more before and after pics on this blog later today! For now check out the new header collage I created this morning between toddler temper tantrums, preschooler melt downs and eight year old whining (that’s what Nick has been doing whenever we have to go some place without his dad-evator (as in Dad as elevator)! Considering how little attention I had to give it I think the header is fabulous!

Fixator-less Pinsite Infection… not so much

We had a bit of a scare recently. Nicholas has a random high fever and headache for about 4 days. When we took him to the doctor we also mentioned an itchy red spot on his leg. The doc noticed it was right on an old pinsite. Nicholas always had headache’s with pinsite infections. He had no other symptoms so his doc thought it could be an infection in the old pin site. Apparently infections can lay dormant or something! It also happened to be a pinsite that had quite a few infections when he had his fixator on.

Luckily this diagnosis happened on a Thursday! Chat Day!! I was able to explain it all to Dr. Standard that night. And the strangest part at the time was the fact that by the time I was on chat that night the red spot was gone! Old pinsite scar looked like an old pinsite scar and nothing more. Dr. Standard mentioned some possible things that could be going on (including bone infection) and said he could see Nicholas in the morning. Nick had an appointment Monday anyway but I was relieved to get to take him in sooner.

At this point Nick and I enjoy these little trips. We get so much time to chat just the two of us. It is a 2 hour drive from our house in PA to Sinai in Baltimore. It is all so familiar to me… the curves of the road, the river, the exits with good eats and clean restrooms. I try not to stop on the way down though.

Friday is not  a usual clinic day for Dr. Standard but it still was not much of a wait for us. He must have come between surgeries. Thankfully Nick’s x-ray’s looked GREAT. His bone looked prefect! (his eight plate is still doing it’s thing as well) I did not realize just how worried I was till I felt the relief wash over me when Dr. S came in and said all was well. Now we know it was a virus since my 3 other kids had it too but at the time it was just Nick, who hardly gets sick and it was scary!

At the appointment Nick was scheduled for on Monday we were to schedule Nicks knee surgery so we did. Dr. S said we could do it in June or September. We were trying to make sure Nick has no limitations during our August family vacation!! We chose June since I would rather not interfere with school if we don’t have to. So on June 17th (Nick’s baby sisters 1st birthday), Nicholas will have his knee surgery. June 10th was an option but we’ll be at Jellystone Park with Dr. S and other Sinai families that weekend! Somehow we were able to plan around all our little vacations! Dr. Standard’s new secretary Ann (not so new actually but we had not met since Barbara was still Dr. S’s secretary when Nick last had surgery and we loved Barbara) came by to tell us what dates were available. Summer is so busy at the RIAO I think we were lucky to get Nick scheduled for June.

So now the countdown begins.

I would love to write out all the details but really I did not ask for them. I trust Dr. Standard and that he knows what to do. I know he is getting a ligament from a donor. I have previously described the surgery as similar to an acl replacement. Nick’s knee is loose (or loosey goosey depending on your particular lingo). It moves in ways it should not and while he has no troubles now there is the potential from big trouble. Nick’s knee could get stuck in the wrong position which would require some much more serious surgery.

I guess this is small compared to a fixator but it is still surgery, a few days in the hospital and 6 weeks recovery! Nick has art camp in June but I am thinking a sitting activity will be just the thing for him. He’s taken abstract art and clay this year and he loves it! I know he’ll be upset not to be able to go swimming for a few weeks but we’ll make the  most of the time we have and not put him in situations where he is watching other kids do something he can’t. That worked well when he was in the fixator. We did not go to amusement parks and such because come on, fixator and roller coaster just don’t seem like a natural pairing!

I know he’ll be ok. His knee will be stronger and I will really feel that he is over the hump in terms of surgeries. More than 1/2 way to the light at the end of the tunnel. The light being 2 legs, same length, with stable joints, carrying Nicholas into his future. We’re getting there!

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.