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!!!!

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!

Teeter Totter Knee or Dynamic Valgus

For the last few weeks Nicholas has had a bit of knee trouble. It started with popping and clicking and sometimes it didn’t want to unbend. This happened a lot for about a week and then has been intermittent since. I was going to take him for an xray closer to home but Thursday I was helping out at the RIAO web chat and I figured I’d ask Dr. Standard about it. My instinct was that he would want to see him. Nick’s knee is unique, which I guess you could say for a lot of FH kids, but Dr. Standard knows it inside and out ; )

I was right and we went to Baltimore yesterday. I was worried that the problem was the ligament Dr. Standard put in in June of 2011. Dr. Standard had the same worries but it turns that is ok. Nick has a teeter totter knee or what’s known as dynamic valgus and he’ll need an eight plate put in to correct it. This was a relief compared to the problem being the ligament so it was good news in a way but then again your kid needing surgery is never actually good news. Yes I am grateful it is smaller, yes I am so grateful it is fixable and yet today I am kind of down about it. It’s actually 2 more surgeries.

Nick was relieved to hear eight plate. He wiped his brow in an expression of relief when he heard it was a small surgery and not happening right now. Can you imagine a kid reacting that way. My boy is really amazing and I know when the time comes he will likely take it in stride but after all he went though in the last year I will pay close attention to his emotions and reactions. It is a lot for a little (or not so little) boy to go through.

So surgery will likely happen by spring and it will have to be sooner if it starts to hurt him. Right now he’s saying it does not hurt but nearly trips him and is annoying. We might opt for January to get it over with in winter. Plus he will likely have the 7 screw plate in his tibia removed when the 8 plate is put in and that will mean weeks of downtime too. Honestly I am glad the plate will be removed. I know it was ok to be there but it is a potential problem in my mind and if it’s not needed I’d rather it be gone.

Teeter Totter Knee

Yesterday was also Christopher’s 5th birthday. We made it a great day despite spending it on Nick’s knee mostly. Chris was excited to get to have lunch in the cafeteria and cake by the water fountain in the atrium in the lobby. I also took them to build a bear at the hospital. It was fun to watch the kids choose their animals and just be happy. Because we bought four I was able to buy $50 in gift cards for $25. Nick asked what we would do with it and I said we’d talk to Marilyn about giving it to kids who will be in Baltimore for the holidays for surgery. When we were in the parking lot he saw a kid in a fixator and he wanted to run after the boy and give him the gift cards. I probably should have let him but we were just getting into the car and with all four kids and Nick would have really had to run to catch up to him.

Going to the RIAO with the four kids myself was not a hard as it could have been. Thankfully we were put in a room pretty quick. It kind of turned into insanity after that. Playing cards strewn across the room, paper from the exam table ripped and thrown, singing, dancing, yelling and general excitement. A doctor who was not working with Dr. Standard peeked in and I said “I bet you’re glad you’re not coming in here”. He just stared and ultimately I think he was entranced with Elizabeth’s singing and dancing (2 year olds are quite entertaining at least to me). As soon as she saw him watching she stopped but it was really a fun moment. When Dr. Standard came in he wasn’t phased by the chaos.

Nick also does not need a shoe lift. His difference is a little more than a centimeter or maybe it was a centimeter and a half. We found that out at the end of the visit so my brain was fried by then. I thought it meant that Nick finally slowed down growing but Dr. Standard said his leg might just be keeping up better at the moment. Sometimes the lengthening stimulates growth and hopefully thats what happening. No lift is a pretty big deal! And makes a nice happy ending to this post.

50% weight bearing… ??% stressed…100% GRATEFUL

The Bat-mobile at Sinai

Batman arrives at the RIAO. This is after we had the chance to see him in the lobby where he whispered in Nick’s ear “Get better ok”.

Super Hero and Doctor Hero Hugging!

With the summer of the “normal kid break” and the 7 screw plate coming to an end I am realizing just how stressful this has been and continues to be. Nicholas had a great visit with Dr. Standard yesterday. His arm looked well enough to leave the cast off and just get a splint. His leg was healed enough to go to 50% weight bearing. It’s a big step considering he has been hopping for what feels like the whole summer.

We’ve got to pick him up an additional splint to use while swimming! Swimming is going to feel so great. He can 100% weight bear in the pool. I can’t wait to see my boy moving freely and joyfully. Really can’t wait!

Comparing the Nick of this summer to the Nick of last summer I see a completely different kid. He has grown so much in so many ways. Physically he is like 20lbs heavier and so much taller. He’s almost up to my eyeballs! At nine years old that’s pretty tall. Emotionally he has matured as well. Maybe this is all normal. Since he’s my oldest this is all I know of mothering a nine year old.

This summer has stressed us all. Last night Nick started having pain in his arm which he said he felt where the break was. I was helping out on a web chat with Dr. Standard so I was able to let him know right then. Basically he told me to give him ibuprofen round the clock for a few days but if the pain persisted to call him tomorrow (meaning today).It was a hard night. Pain would have been ok I am sure but pain right where the bone broke frightened me. Nick and I were both up past midnight.

Today it seems that the pain only happens when he bends his arm and it is not only where the break was. His elbow was hurting today and we are thinking some of the pain is in his wrist. That would be normal. He’s not moved his wrist or elbow in like 6 weeks! But nothing about a broken arm feels normal to any of us. Nick is keyed up because one something goes wrong it is easy to imagine wrong stuff will continue!

At least Nick’s leg looked great on the films and it has not caused any pain. My one worry on that front is that when Nick started to put weight on it while using the walker he seems to turn his foot totally out to the side! UGH Not what we want to see. Yesterday it seemed like Dr. Standard had some concerns about Nicks knee but we wont know anything till we can do a standing x-ray at his next appointment in a month. Lengthening is a big strain on the his knee (his super knee surgery was in June ’11) and I imagine all the rest has been a strain as well. I am hoping he wont need another 8 plate or any other kind of intervention for a while but really hoping is silly. It is what it is already. It will be what it will be.

The fact is we planned this last lengthening when we did for 3 reasons. 1. Nick’s foot began to hurt. 2. Steven was loosing his job and we only had insurance for a few more months. 3. We wanted Nick to be done by summer time or at least by midsummer.

Reason number 3 was not so realistic. We did our best to make it happen and then life happened. Nick said to me “Mom you promised this wouldn’t be a bummer summer and it was”. Nothing SUCKS more than hearing that. At least I pointed out that it is not over yet and as home-schoolers our summer can continue!

We’re hoping to move to less stressed and by next month to more weight bearing. As hard as it has all been everything is ok. This all could have been much worse. We still have the best doctor and team looking after Nicks bones! Here we thought it was just the leg!

Yesterday was a great day at the RIAO. Batman was there. Truthfully my kids are not so much into Batman but it created a really fun vibe. Personally it made me happy to see all the happy kids and the hard working RIAO folks watching the happy kids. Nick was glad to get into the cast room for removal but when it came time to do it he was scared. Melinda the tech was so patient with him. She always is and we’ve spent a lot of our RIAO time with her this summer but this was unusual for Nick to be so upset yet she was easy going and got it done.

Then Nick was scared to get off the bed to go to xray and the tech said (I wish I could remember his name he is the least chatty guy but great all the same) “That’s ok I’ll just wheel him over”. Another instance of patience and kindness making all the difference. I was just not feeling calm myself and it was nice to not have to be the one to figure it all out and make it all ok.

So now we make sure Nick is not more than 50% weight bearing. We hope the arm pain goes away. We try to keep the arm safe. Maybe most importantly we try to have fun and find some cool water and swim. And of course focus on how darn lucky we are in so many ways. All this bone business might have made a bummer summer but we tried our best to make the most of it, and it was all fixable, and Nick still grew 6cm of new bone in his right leg. Even when it kind of fell apart he didn’t loose any of the length he worked so hard for.

The truth is Dr. Standard preserved the length. I don’t think that was a guarantee. At least from what I have read of others experiences with other doctors. Perspective is so valuable. I am trying to teach it to Nick in the kindest way possible. Not just to be happy because it could have been worse or because he’s better off than others but to look at how far he’s come. From my perspective it never ceases to amaze and my gratitude is always present (at least to some extent) even during our first and hopefully last bummer summer!

Summer

We’ve been too busy to write. I hate to have to recap but I think it’s worth it in this case. Nick’s post surgery follow up with Dr. Standard went great. His cast was removed and he got a script for a knee brace that would immobilize his knee when needed but also had a dial to adjust the range of motion possible. It was. Relief to know that big blue’s days were numbered but we would have to go to a prosthetics and orthotics place which would have to order the brace so it could be a while.

Fortunately that was not the case. The RIAO called Maryland Prosthetics and although they said we’d have to wait they could see Nick that day. When we got there we actually did not have to wait and we had a great surprise. Apparently a brace had been ordered for Nick before his surgery and the gentleman man at Maryland prosthetics had it delivered to his home the Saturday after Nicks surgery so that he could bring I t tows at Sinai. Since Nick got big blue that was cancelled but they still had that brace so Nick got same day service! This was so wonderful. I swear I almost cried. That giant cast was no fun for Nick and with the brace he would be able to go in the pool and take it off when relaxing. The people at Maryland Prosthetics were exceedingly kind and I know we’ll be going there for any needs in the future. I might not have their name right but I’ll correct that later if needed.

I’d like to report that it’s all been sunshine and rainbows since then but that’s not exactly true. Nick’s not loved the brace. On the hot days it’s been pretty hard to get him to keep it on. That’s the problem with something removable. At the start it bothered his stitches some and after a while it just seemed to bother him. Nick is supposed to wear it when he sleeps but his dad told him a few days ago that he did not have to. I could not believe it. I always follow Dr.Standards instructions and was so mad at Steven. Nick had an appointment scheduled for the 25th of July that we had to cancel because we were in NY, Steven had to go to Delaware for work and I did not feel well enough to drive from NY to MD with 5 kids on my own. So I think Steven was thinking that by now Dr. S would have let him wear it less but really I don’t like to assume anything and I will be very upset if anything is amiss with Nick’s knee because Steven thought he knew better. We’re going to MD next week so we’ll know soon enough. There’s more to share but I’ve got a cranky one year old to tend to.

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!

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  : )

8 plate summer update

I cant believe it has been so long since I have posted but life has been busy here. Baby number 4 is keeping me busy! Nicholas has been doing great! In fact tonight he is at a baseball clinic learning how to play with former pro athletes and having a great time! This summer he has started jumping off the diving board at our local pool and going down the water slide and loving every second of it. All we have to do is get to Hershey Park and go on our Glen Brook vacation and summer will be complete!

We also got great news yesterday in Baltimore! Dr. Standard said that Nick’s super knee surgery can wait another year or so and as you can see from the xrays his 8 plate is doing it’s job quite well!  When Dr. S asked him how his foot and ankle were feeling Nicholas said “great, fantastic”.  I cant think of anything better to write than that!

Top Speed Nick – Full Speed Ahead

Nicholas is back to his usual speedy and rather happy self.  He still has his emotional moments but thankfully they are not eight plate related these days. He pretty much recovered as Dr. Standard said he would. Boy do I like that thinks happen as he says they will.

Nicholas will be finishing up kindergarten in the next few weeks. I can not believe how fast it has gone and how much he has learned. I still have had  my worried though. With these crazy hot days Nicholas has started wearing shorts. I  have to say I was worried that the kids might say something about his scars and the fact that his leg is smaller but nothing has happened. And it did not occur to Nicholas that they might (thank goodness I keep these worries to myself… at least till he can read the blog LOL). If only all of life could be that way. Still I am grateful that he has not been teased or anything this year despite his fixator, cast ect. I am so proud of how well he has done in kindergarten and of the boy he has become. His teachers and principle always have the most wonderful things to say about him. His gym teacher actually told me that I am lucky that he is my son and lucky to have him in my family! She is retiring this year and said that she is sad that she will not get to see him grow up. I’ll have to give her the blog address to keep up with him.

Well our next project may just be a video but I’ll post an update on that soon. Eye of the Tiger is one of Nick’s favorites and he has his own moves to go with it. What better way to showcase how unstop-able kids with fh are than a video of my guy!