“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.

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!

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