Breakthrough

Nicholas is having some breakthrough pain in his foot. It has reminded me of a conversation I had with Allison, Dr. Standard’s PA, in the fall about what we could do about Nick’s foot and she mentioned how painful foot surgery it. She was right. She’s a lot like Dr. Standard; calm, kind, smart and pretty much right about stuff. I was going to write “right about shit” but Nick does not like profanity. He’s not likely to read this so maybe shit is ok to share here.

Shit as a topic brings me back to the pain he is having. We had spread his pain medicine dose to every 6 hour instead of 4. Then down to 5 because of pain and now we are going back to 4 to see if the pain goes away. If it does not I will email Allison to let her know Nick’s pain is getting worse instead of better. If it does get better at least we know it’s spreading the doses that made the difference and things are not worse than they were. I am also wondering if we should go to 1 pill every 4 hours instead of 2 every 6. Or one and a half ever 4.

If things get better at 4 we might still spread the doses a bit if the pain is manageable. Nick actually thinks the pain is spasms so we are giving him valium as well. I can’t help but want him to be less medicated if possible but I certainly wont let him suffer. Some intermittent pain is not equal to suffering IMO.  I am encouraging Nick to use distraction as much as possible. Right now his little bro is helping with that.

This seems to sound more confusing than it is. I had just written to Nick’s teachers to say I he could start doing school work next week. Seeing as he was less medicated I thought he had enough mental clarity to do so. If he’s back to 2 pills every 4 hours I don’t think it will work.

It really does not pay to stress school work right now, Nick’s teachers are not pushing and really taking their cue from us.

The other breakthrough of the moment is that I am taking a bit of a break from Facebook. I am not deleting my account or anything but I took it off my phone and wont be checking with regularity. This blogs updates will still post there so you can still get updates on Nick there if that’s how you do. My email and cell number are listed on my account so actual friends can reach out if they so desire. With changes to my school schedule coming up I really need to reconsider how I use my time and I also want to be more mindful in terms of how I connect with people. Simply put this breakthrough is about more than taking a break but I will leave it at that.

Our Best Days

Nicholas did not trick or treat last night. Nicholas did not dress up. But Nicholas did walk our dog and that made me pretty happy. I was happy that he could. Walking sans crutches is still feeling fabulous and looking fabulous (to me, Nick is having some leg pain which we assume is from not bearing weight for about 5 weeks).

Trick or treating was rough last year. He was waiting for a new shoe insert and brace (I think that was why he was in pain). Fall seems to be a rough season for his foot (which some theories are brewing on for another post). This year he just didn’t want to. At first I was upset and tried hard to encourage him but then I quit because I realized he really just didn’t want to do it.

Holidays I also realized can be little pressure cookers of stress! We want them to fun and fabulous. How many trick or treating Halloween’s are there in ones life time? Oh the pressure!!!!

This morning I realized, while reading a post on the fibular hemimelia support group that the holidays are not my favorite days. Sometimes I feel like they should be but if I am being honest, they really are not. Another mom was writing about her son having a hard time and not being able to trick or treat. I knew that feeling. I knew the emotions she was having so well and commented:

Nicks had some rough trick or treating years. He didn’t do it this year. He just refused but he’s 12. I could over analyze and wonder if his rough Halloweens have made him less into it but I think he just doesn’t care about it that much. I feel like holidays are a little like summer where I try hard at times to have as much fun as everyone else and make the most of it but my favorite days and our best days as a family are not the holidays anyway! All the pressure for it to be great and memorable isn’t really conductive to joy. For me…

I continued a bit more but I don’t want to share personal information about someone else and their child here. I hoped what I wrote helped this mother see that she is not alone. That these feelings are normal and that our kids really don’t seem to focus on the hard times. Nick does not talk about his hard time trick or treating last year or any other year.

To be honest I was kind of grouchy yesterday. I think I was upset about Nick not wanting to trick or treat, maybe it’s the bittersweet nature of him growing up. I also felt pressure to make it fun, be happy, it’s a holiday… etc. Well then the dog didn’t want to wear her costume, I didn’t know where the kids trick or treat bags were, getting everyone dressed stressed me, we were running late, Steven was not with us, Bess fell within the first 5 minutes…. I could go on. I wish I could stop this kind of spiral when it’s happening but I just smiled and wished I was off somewhere drinking a glass of wine!

A few hugs from neighbors and seeing friends out and about helped but I just prefer regular days. Holiday’s stress me. It’s fine and I don’t think it’s a unique thing to feel this way. Acceptance usually brings some easing of the stress so maybe next year will be better for me. It’s interesting to me though that I can be grouchy and grateful at the same time. I am so grateful for kind neighbors and my children’s happiness.

It was a beautiful night regardless of whether it was the best for not.

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.

Ease

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So it seems Nick needs to ease back into full activity. He’s had some pain since beginning to fully weight bear. I checked in with Allison and this is normal. Knowing that Allison said it’s ok seems to have put Nick’s mind at ease. He remembers the third lengthening’s drama and worried about his bone collapsing. Even though that lengthening ended traumatically with him breaking his arm and his leg crashing too it was still super successful. Dr. Standard was abel to save his 6cm and make his leg even straighter than it had been.

In addition to finding out that Nicholas could bear weight on Monday, we also found out that he needs another 8 plate, this one in his femur. We are hoping it can wait till the PRECICE rod comes out but it might need to be sooner. His leg just wants to kick out to the side… again and again and again. If it has to be it’s own surgery so be it.

Above you can see Nicholas’s amazing new bone! He needs to focus on hip strengthening exercises pt wise and Dr. Standard also prescribed gait training so I think we need to have a session at the RIAO so Steven can learn what to do or go back to formal therapy close to home. Nick did well at duPont previously. We will work it out.

Of course I am resisting stressing this leg pain myself although I can’t help but feel like I wont be fully at ease till he is walking pain free. I have to knock that thought out. This is a process and I have to let it be what it is. A friend shared the wonderful quote below yesterday and I am trying to let there be room for whatever feelings are present. To acknowledge them and not try to knock the out, but also not stress them. That’s a process too! I also shared this in the support group and it resonated with others as well. Thanks Scott!

“We think that the point is to pass the test or overcome the problem, but the truth is that things don’t really get solved. They come together and they fall apart. Then they come together again and fall apart again. It’s just like that. The healing comes from letting there be room for all of this to happen: room for grief, for relief, for misery, for joy. (10)”
― Pema Chödrön, When Things Fall Apart: Heartfelt Advice for Hard Times

Lucky 22 Centimeters

On our way out of Sinai on Monday Nick was pretty happy. We had just learned from Dr. Standard that the lengthening portion of this surgery is done. I had expected it to be. I had marked May18th as the last day in our lengthening register. Doing 4, .25 mm lengthenings per day made it pretty easy to calculate but it could not be official without an x-ray and the ok of Dr.Standard. 5cm of lengthening achieved with the PRECICE. There it is.

A filtered picture of Nicks leg to help hi-light where the new bone is filling in.
A filtered picture of Nicks leg to help hi-light where the new bone is filling in.

Back to leaving on Monday, while expressing his joy Nicholas said “Mom these people are miracle workers. I want to make sure that these things don’t get forgotten and there are people to keep them going”. So I asked if he wanted to be a doctor or a physical therapist so he could make sure they continue but I could tell by the look on his face it’s not an option (and I know he wants to be a chef), so I reminded him that there was a fellow in the room today, as always, because they are always teaching others so these techniques can continue and spread further. Nicholas said that was a huge relief. He cares about the future and other kids having access to what he has had. He feels lucky. That’s the magic I could not have imagined when he was a newborn but my child is lucky.

Nicholas has gained 22 centimeters through leg lengthening (so far). 22 is my lucky number but I think it’s lucky enough to be shared. For along time I thought Nick only needed 20cm’s but predictions change. Not usually quite so much though!

I could not have imagined almost 12 years ago that he would have come this far by this time. Nick’s legs are pretty much even now (again)! This journey has not been what I expected in almost any way. I thought I would have to work so hard to help Nicholas feel good about himself because of this big limb difference. I thought I had to make everything ok. I thought wrong.

He’s always been ok. He has always been his own sparkling self. That was always my biggest fear, not what would become of his leg but what would become of his heart. How would he feel about himself. Now I know he is ok, no matter what happens to his leg.

So many fibular hemimelia families are at the beginning of the journey, wondering what will be, trying to make the right choices. I’ve often said you just have to make the choice and then make it right. Making it right means finding the best possible doctor and team to live that choice out with your family. No one else can make that choice for you. I don’t know how Nicholas could have come this far without the ICLL team and I am grateful to all of them but it’s Dr. Standard that has me in awe still. It’s Dr. Standard who can ease my fears like no one else. He knows my kids leg inside out and he knows fibular hemimelia inside out. That’s everything. I said thank you on Monday but it never feels like enough.

So what can we do with our gratitude? We can fundraise for Save-A-Limb! Want to help click here! If this blog has helped you or inspired you, please give. If you have ever felt inspired by Nicholas, please give. If you want to help others walk, give! We joined an awesome team this year with our friends from Mexico. I can’t wait to them on October 10th!! Its the 10 year anniversary of Save-A-Limb and we are so exited. Nick will be riding! Please consider joining us for what will be an amazing day. You can give or register here. Please also consider sharing and encouraging others to give. Save-A_Limb has helped Nick get what he has needed. We will be forever grateful. Nicholas has had the best care in the world and for that we feel so lucky!

Still Fearing the Jinx

Yep, thats me, still fearing the jinx. Things are so uneventful leg lengthening wise, except that the leg is lengthening, which is awesome of course. I will take Nicholas to Baltimore on Monday for his check up. He’s lengthening 4x per day and spasm free for now. At home instruction is happening. Steven was away this week but I didn’t feel trapped. We were in and out and about.

Nick did have a fever on and off this week but a virus has been going around in our house so I am assuming that’s the explanation. Luckily he did not get the gastrointestinal symptoms his brother had! He may really have the stomach of steel he purports to have.

As for me it’s really just been a hard couple months and Monday night I felt myself coming out of it more and more. Ironically it is because I realized that it’s not going to get better. Having stuff to deal with never ends. There will always be something. If I can’t feel ok in the midst of it, than I will be sad and stressed forever.

Part of this little repeat epiphany (because really, I have had this thought before) was a conversation with a friend and the arrival of a journal I ordered from England. It’s amazing. Just the thing I needed to inspire reflection, peace, gratitude and more. If you journal or even if you never have before it’s worth checking out. S. C. Lourie is the artist, poet, author and creator of Butterflies and Pebbles. Her messages just speak to me. Check it out. Maybe they will speak to you too.

Ah well… even writing that I am feeling better feels like a potential jinx but I don’t care. Gotta be real. It’s almost mothers day. Sadly this year we will not be heading to Hackerman Patz House like the previous two years. I guess I just feel like I want to make this mothers day about me and my kids. Loving them is the truest, most real thing in my heart and I want to honor that. No jinx worries there.

In Each Other’s Eyes

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Found this little gem on Facebook this morning. It made me smile. People have asked me why I do what I do and this is a big part of it. Trying to translate that feeling into a career seemed natural to me and maybe it is. I am in a Master of Social Work program. I thought I could be a hospital social worker. Maybe I will, who knows. Since starting school I have opened myself up to all possibilities, deciding to go where the work leads and see what happens.

Still I feel a pull toward families, and parents of children with differences in particular. I will never stop supporting fibular hemimelia families but I will have less time to do so when I am employed full time. Even now being in school has changed my availability. I am beginning to feel like I am into too many things. Focusing on Nick’s fibular hemimelia journey is always the priority and right now leg lengthening is the frame work my day is built around. That and meals. Dear god my kids are always hungry.

Monday I start my third class. My second class was really a challenge. Not so much because of the content (although the quantity of content was overwhelming at times) but because of the focus I lacked. With Nick having surgery and me having my small surgery and Monk dying, I could not focus which makes me a little anxious about starting my next course. End of school year is so busy. Nick is in the thick of this lengthening. Life feels like it’s pulling me in 10 different directions at one time.

And still I want to do all of the things I do. I wonder how I will manage. The whole point of this school thing is to actually be employed someday and I wonder how other moms do it. I know in some ways it has been a luxury to have been able to be a stay at home parent for so long (though it certainly does not feel luxurious, nor does it generally afford one actual luxury items). I know it’s a luxury to be able to go to graduate school and choose a path for myself. I also know the only way I will be able to do it, is to stay in the moment and connect regularly to why I am doing it.

Someday I will sit across from a client or in a group and see my reason reflected back at me and thats all the reason I need. That and being able to afford a cleaning person, which is an actual luxury I have always had my eyes on for whatever reason.

New Questions

Had a little moment of horror tonight. Remember how I missed Nick’s appointment? Suddenly that feels like it was a really bad idea. Steven just told me that Nick’s eight plate wont correct the bend in his leg. He said Dr.Standard said it will only correct it a little but they didn’t talk about what will correct it. I would not have let that moment pass without asking how to correct it. Of course it makes me worry that Nick wont be able to have the precice in his tibia next time or could need some other surgery. I have no idea. My mind goes all over the place.

For now I will try to keep my focus on how great his legs look and how well he is doing. Aside from some pain Thursday night he is doing great. We walked (Nick wheeled) to our last community dinner of the season. It was nice to eat outside and then let the kids play some. Dessert and coffee sitting in the grass felt particularly lovely for me.

Time for a game night. Some kids are not so much in the mood but we are forcing them away from screens and into family fun! We’ll see how it goes.
N.C.Legs

2 Weeks Post-Op-Update

Writing less these days. Things seem to be moving along and progressing as they should. After my last post Nick started to turn a corner. While I was out on Saturday (doing an interview for a school project that was totally amazing and reminded me why I love school despite how hard it is right now) Nicholas decided to try getting up on his own and now he can. His leg is still weak but he moves it with his arm and he is not trapped in bed waiting for someone to help him out anymore. That is huge morale wise.

Then we got a visit from a wonderful gal named Eden and her family. Eden has a precice in her femur just like Nick but is ahead of Nick. In fact she finished the lengthening portion of her surgery this week! #edenstrong!!! Her mom has been such a great support and information person for me. It makes a huge difference to be able to reach out with questions to a mom who has been there. It’s been a while since I wasn’t the mom in the know and I feel so much gratitude for this family sharing their journey with me and a deeper love of what this blog and the support group offers to others.

I loved seeing Eden and feeling like everything Nick is going through is normal and will get better. I think Nick was pretty impressed and heartened to see Eden lifting her leg on her own!!! Like a champ really! He’s been in a pretty up mood ever since. Eden also gave him this cool putty as a gift. It has had him mesmerized. It’s fun to see my screen loving boy totally into some tactile play! We all need more of that in our lives. Connecting with families on the same journey is huge! Seeing Eden get around on her crutches like a pro really gives me hope that Nick will be on the move soon, and even if it is not soon, it’s ok. I think we both feel like he will get there.

Eden’s parents also shared a cool app with me called Dosecast. Steven and I can put it on our phones and have reminders for when to lengthen and when to give pain medicine. I think I will use it for vitamin reminders too. I didn’t think I would need it for lengthening reminders till yesterday I forgot the morning lengthening. I realized by 10am so it was fine but still really surprising to me. The app will be a godsend! 20150406_130531In other news we’ve been yo-yoing with the pain medicine a bit. Nick was not needing it during the day and then the lengthening has seemed to start to hurt some. Then pt got really hard and he needed pain medicine for that. It’s pretty normal actually. Because of the eight plate Nick’s knee seems not to like bending at all but because of the lengthening extension is our focus so I am trying not to stress that. Then last night Nicholas started feeling spasms. He actually said to me “Mom I know enough medical terminology to know that I am having spasms”. So I gave him valium for that. And then he could not fall asleep so we chatted about going back to school and lots of other things.

Nick’s sleeping through the night again but I am not. Our dog is sick so I have been sleeping on the couch with him. I’ve only had a few nights in my own bed since surgery and I am realizing the couch is killing my back and not sleeping through the night is making my brain foggy. It’s great that the kids are on spring break this week so our days are pretty laid back. Although I am too distracted to get much school work done during the day. Nick is not enjoying his school work either. I am trying not to dread what’s next. In general I know that lengthening is going to get harder as Nick’s leg stretches. The pain meds are doing their job so far. I just hope this continues.

Incisions are healing well though some are annoying Nick. More normal stuff! They all look pretty good. Walking around is going well with the walker. Stairs are still hard with crutches. Appetite is still not what it was but between the pain meds and Nick being less active I think that’s pretty normal too. “Normal” one of my most hated words is getting used a whole lot in this post.

Friday I have a small surgery to excise an area where I had a new growth removed that came back abnormal (here I would totally prefer the word normal). I wish I was as brave as Nick or even a tiny percentage as brave as Nick, but the thought of getting stitches in my arm makes me anxious. Monday we go back to Baltimore for PT, a new brace for Nick and a check up. I am dying to see that this magnet is doing it’s job!!! The discomfort Nick feels is a comfort to me in that regard. It makes me feel like something is actually happening!

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I will see if Nick would like to do a lengthening video so you all can check it out. It’s pretty amazing. Although you can’t see much happening at all. It makes a noise and that’s about it.

Please send a good thought or a prayer to our friend Nathan who has fibular hemimelia too and is having surgery today! He’s getting an external fixator. It’s not an easy journey but he is a brave and strong kid with an awesome family. The are all in my heart and thoughts today! #teamnathan

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.