#STANDARDIZED

I am not a hash-tagger. I could probably count on one hand how many I’ve used them over the last few years since they have become a thing. However, I may be becoming a convert. Chandler, one of our RIAO friends, created this one and you can check her out here. Dr. Standard really has the perfect moniker for such things.

Now back to he who has been #standardized, over and over again… Nicholas is doing really well post op. Super Leg surgery was on Wednesday. Today he is being weaned off his epidural and so far so good. He’s eating some, drinking well, sleeping a lot and generally handling this experience like the champion he is.

As for what Super Leg means, in Nicks case it involved a lot more knee work than I thought. Dr. Standard too a piece of Nick’s IT band and made him an ACL, he tightened the ligament he gave Nick in his first super knee surgery and he cut off a flap that was a meniscal tear and was probably causing Nicks popping an pain.

Nick also got a 2nd eight plate to correct his valgus so he has 2 now.

The Precice rod was removed.

Nicholas ankle and foot got the super treatment as well. His heel was brought down so he no longer has the rocker bottom and his ankle was fused.

On the left he had staples and a screw put in to stop the growth of his tibia. These things are removable if his growth trajectory changes and nothing was done to his femur but that can be at the age of 14. So we can watch his growth and see what happens.

Today Nick’s post op splint was removed and a cast put on. Allison did that and it went so much smoother than I thought it would. Usually removing anything is stressful but it went great. Nick has a temporary brace for his knee but a more specific one should be coming this afternoon. Dr. Standard does not want him to bend his right knee for the first 2 weeks post op and then he will start bending gradually. For Nick’s left leg we have already received exercises and started them yesterday with the help of PT. Inpatient PT and OT help so much through this process. They are so understanding and really got Nicholas going despite his reluctance. This time he didn’t resist too much though and he realized pretty quickly that for his left leg moving and bending felt kind of good.

After taking some steps and getting into the reclining chair also known as my bed for the last few days, Nick is asleep. If all goes well he could be released tomorrow. He’s had his sushi. He’s up and moving. As long as his pain stays managed we should be good to go tomorrow. Super leg inpatient stay almost complete.  #superleg, #nofibulanoproblem, #standardized, #tiredbutsupergratefulmothersigningofftotakeanap

Swimmers Legs

swimmers legs

I don’t think swimmers legs are a thing. It’s just all I could think when I saw this photo. Maybe because he had swimmers ear and that’s been on my mind. When I took this photo Nicholas was diving in and I thought I captured the moment better than this, but then I thought this photo is actually pretty fun.

Tonight was the last home swim meet of the season. Nick swam several events and did it all pain free (to my knowledge). He’s been pain free almost all the time. He’s been doing a wonderful job swimming. He’s been hanging out with friends. He’s been free!

A free summer is what he wanted and I think he is there now. I almost cried watching him swim tonight. I don’t know why it comes over me sometimes and others I don’t think much of it but tonight…

Nicholas has worked hard to have two long legs. Watching him dive and swim really shows off just how long they are.

Overall I love that Nicholas gets to have this amazing team experience. Fibular hemimelia can’t stop a swimmer! The Arden Swim Team is made up of great kids, amazing coaches and dedicated parent volunteers. I don’t understand much about swimming but that doesn’t matter. The kids learn just fine without me being involved in the technical stuff. Though I do try to repeat what I hear the coaches say ….”Chin up! Big arms!”.

So summer is literally moving along swimmingly! My only complaint (and it’s a big one) is that I miss Charlotte terribly! She has been gone for over week already. I am sad she is missing almost all of the swim season. She is also missed by friends which is always sweet to hear, and as sad as I am, I am happy for her to be having her own summer fun with her cousins in PA.

Update:

Here are two cool shots of Nick from yesterday! It looks like the one and only Joe del Tufo captured the moment I tried to. That’s his camera in the corner of my shot! Check out Joe’s gorgeous photography here , we have two of his photographs in our home and I love them! Well two not counting other swim team photos! We are so fortunate to have talented folks in our community willing to share their gifts.

And there’s my boy looking like he’s taking off! I love it and him!!

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If only I had…

This has been a busy week. It started on a rough note because Nicholas had an ear infection. This has been a totally new experience for him and the pain was beyond any leg pain he experienced during this 4th lengthening process.

Before the ear pain even started he had been having leg pain. Pain enough that he put himself back on crutches full time. When I wrote to the RIAO they said going back to crutches and easing back into activity made sense but Sunday the pain really seemed to be getting worse. My plan was to call Monday morning and get Nick seen as soon as possible. I was panicking a little.

Sunday night in the wee hours was when Nicks ear pain was at it’s worst. Monday morning all I could think of was getting him to the doctor for that. His leg was largely ignored till much later the day when I finally reached out to the RIAO.

The reply was that Nick should come in on Thursday. Although Dr. Standard didn’t think his rod would fail he needed to check Nicholas out to figure out what was causing the pain. At this point I was really upset with myself for not calling earlier. For not remembering first thing. For letting the ear infection, a pretty common thing overshadow his leg, which felt like a big deal at the time.

“If only I had called earlier”…

In truth things worked out exactly as they needed to. Why was I so inclined to blame myself? Like I have control of everything in the entire universe! Monday would have been a terrible day to go to the RIAO. Dr. Standard saw 38 patients! Being in the mix of that would have been rough! We would have been there ALL DAY. Mostly we don’t mind being there actually, but still an all day visit, which I likely would have had to bring Christopher and Bess to would have be hard. Nick’s ear still hurt, we were tired from a long day traveling the day before.

Thursday turned out to be the perfect day to see Dr. Standard. It was super quiet at the RIAO. We waited some but it didn’t feel like much time at all. Nicholas and I were both feeling pretty relaxed. Marilyn came and chatted for a while. And as I wrote in my previous post we got to meet Liam and his family!

Obviously Thursday was the day we needed to be there! Everything was fine with Nicks leg. Trying to rush in Monday wouldn’t have changed anything and I knew Thursday that no matter what happened we had the silver lining of visiting with friends to look forward to. I certainly wouldn’t trade meeting Bonnie for a Monday visit!!!

Now the “if only” I have in my mind is “if only I had stopped to breath and relax” (which I eventually did). As moms I think it’s common for us to assume we are in control, everything is our fault, it’s all on us! It’s not and it’s not healthy to think that way. From the little things to the big things so little is actually in our control. Sometimes I try too hard to control what I think I can because I know there is so much I really can’t control but really… really… this is not helping me at all. It seems confusing even typing it.

A few things popped up this week to remind me that when it comes to parenting connection is the thing. I don’t need to get it all right. I will never be the perfect parent but I don’t need to make everything my fault in my mind either, which really is a way of making it all about me isn’t it? I just need to focus on staying connected to my kids. I can best do that by being present in the moment with them. There is nothing more important than that.

TBH

TBH… to be honest. I am usually quite easily honest so I do not use this acronym much. But today I need to.

TBH Nick is feeling down today. I know it will pass. I reminded him of this and of how “normal” it is to feel this way but in the moment it does not make it easier for him necessarily.

Sometimes things are hard for me too. I posted on my personal Facebook page yesterday that things are hard because they are, but that we are not letting it get us down, which we generally are not.

But it is hard. Nick had a big surgery. He has a rod in his leg and we will use a magnet to lengthen it 3x per day for the next 60 something days! That’s kinda crazy. He will not be full weight bearing till maybe August. Maybe. Thats a big deal. He is still on round the clock pain meds. Thankfully at a lower dose but that means more frequent doses so we are waking up at night more. I’ve also added doing laps around the house to his home physical therapy because his leg is really weak. This is normal (I got to ask Dr. Herzenberg about that on the web chat last night. He’s not Nick’s doc but he is brilliant, kind, pretty funny and a fibular hemimeila expert like Dr. Standard). I want to be doing everything we can to help Nicholas gain strength. He is feeling bored and frustrated today at not being able to move his leg. He’s not in the mood to talk about it. He feels like doing whatever it is he can’t do. His emotional health through all this requires attention too and sometimes he just needs space. I get that.

TBH this lengthening will be harder than the others in an important way. Yes it is not an external fixator and yes we are so flipping grateful for that but seriously. Seriously, that does not mean this will be easy. Easier in some ways, yes, but not all ways. This is a femur lengthening which Nick has never done before. Nick’s hip and knee will not like this lengthening. They will want to contract and he will have to work so hard to keep them from doing that. There will be pain. Growing two inches or so in 67 days will do that. We will do everything we can to manage it but that does not mean this is easy.

We are positive people. We are super grateful not to have pin sites. We are super grateful that everything has gone as well as it has. However we still need to be able to say this is hard. I need to be able to say it. Hard does not mean something is wrong. Hard does not even mean bad.

TBH I think we rock the hard times like it’s nobody’s business. I will never forget that. Nicholas has come so far. This journey has strengthened us all. We know how precious every day existence doing what you want is. Every day existence is precious in and of itself of course!!!

There are a multitude of reasons why some people can not live each day doing what they want. Many are far harder seeming than fibular hemimelia. Some things can be overcome and some cannot. Some people keep going even without a light at the end of the tunnel or without the light at the end that they might have originally hoped for. They can become the light.

If fibular hemiemila is the hardest thing Nicholas ever has to go through I would still count him a very fortunate person! I know I am a amazingly fortunate mom. Part of me will always want to make things easier for him but you can’t take away the hard stuff without taking away the light too. TBH I would never want to do that.

Pain, Progress and Plans

Nicholas has had a little more pain today and some muscle spasms. So we are back to pain medicine every 5 hours and added Valium just once. I also took his bandages off which was rough (although his incisions looked good) and he showered with Steven’s help, which was not easy but good for him. Both yesterday and today friends popped by to visit him which was really good! Tomorrow I take him to Baltimore for follow up and physical therapy. His knee is still looking very swollen to me (and is only bending very little). If we were not going in tomorrow I would be calling about it.

Tomorrow we will get the magnet and start lengthening. It’s going to be an interesting week with Steven going back to work. Friends are bringing us meals which is a huge help. Knocking dinner off the to do list is a gift for sure. The logistics of getting all the kids where they need to be each day with Nick not completely mobile will take some figuring out. I think we need to practice stairs more so I can get him in and out without Steven home and we have to figure out shoes or put his immobilizing brace over his other brace or take the brace out (which might make the most sense)… I forgot to ask about that while Nick was inpatient. It surprises me what I forget sometimes!

I know we will figure it all out. I have a whole lot of school work that’s due over the next few weeks which is going to be challenging. I kinda think it was easier to get school work done in the hospital. 4am wake-ups ended up being productive times for me. That was totally unexpected. I did receive a very encouraging message from my professor regarding my work thus far, which is hugely helpful morale wise. I hope for an encouraging report on Nick’s leg from the RIAO tomorrow to go along with it!

Day One and Beyond

P2brochure

I am sharing this brochure that Nurse Lee shared with me to help anyone who would like a better idea of what is in Nick’s leg. He also had an eight plate put in but he’s done that before and I think I have old films of that here somewhere. Monday we will have actual X-rays of Nick’s leg to share I am sure!

I’ve been thinking about what it will be like when we bring Nicholas home, which may be tomorrow. Having a child have surgery is like having a newborn. We will be up every few hours to give him pain meds. We might need to give him additional medication for muscle spasms which are likely to occur at some point in the process. We might have to guess what he needs in the middle of the night. It will be exhausting but we will do it all with a zombie like enthusiasm. Seeing him vulnerable and wanting to keep him from suffering reminds me of the anxiety of having a new baby. You just want to do everything right. Your baby can’t survive without you. Yes we will be exhausted but we will be desperate not to screw this up. We have missed doses of pain meds in the past. We know how awful that is for Nicholas.

Surgery Is a team effort. Nicholas has the hardest part and then Dr. Standard and his team have a seriously complex part. I will never stop being amazed by what is possible.

Eleven years ago I could not really imagine the PRECICE. Internal lengthening existed but it was not a possibility for Nick. It was kind of random and not worth the potential risks. This PRECICE device is just that, precice. It will do what it is programed to do (of course we have to hold it on Nick’s leg and push the button at prescribed times each day… we will be ruled by routine like with a newborn!!). I am starting to feel the joy in the absence of pins and struts, nuts and bolts. Been there done that! We are so grateful for the 17 centimeters and deformity correction that external fixators made possible but Nicholas was so ready for PRECICE.

Physical therapy will still be hugely important. Nick will need to maintain extension of his hip and knee. The lengthening will make his leg want to curl up and we will work to keep it straight and strong. We will do some at home but we might need to do more formal therapy than in the past. Nick will need to be back in Baltimore Monday for follow up in the clinic and pt. It’s going to be a busy few months!

Today my boy has done a little physical therapy, gotten out of bed a few times, transitioned or oral pain meds, ate more sushi, reminded us to wash his hands, said “This is not just about me. I want you guys to be comfortable too”, expressed himself when he had discomfort and smiled with joy when discussing his mostly pain free experience (although I think what he calls discomfort I would call pain). Right now I am grateful for a great many things and one of them is surely pain management! I am grateful to my mother & father-in-law who are caring for Charlotte, Christopher and Bess! We miss them so, so, so much but we know they are ok. We are also grateful for friends and neighbors who are there if needed and have helped make the kids feel special and cared for. And to any of you reading this and wishing Nick well! Thank you!!!