Did I neglect to mention this will be difficult?

Did I? I must have. It’s a thing I don’t always realize because I am such a cheerleader. I think you all need a cheerleader but I don’t want to be that at the expense of sharing the realities.

This is not the only blog on limb lengthening so there are other places to get realities. When I wrote about limb lengthening while it was happening to Nicholas, I was totally realistic and accurate. The thing is, as time passes memories soften around the edges and sometimes they just soften or leave altogether.

When people ask me questions about Nick’s experience in some specific way I often have to search this blog to find the answer. Sometimes I want to suggest others do that instead of asking me things that are here but that’s me being grumpy, or busy, or both.

Anyway despite the fact that it was all hard, it was all do-able (which I always say). Although I feel like I neglect to add that for Nicholas’s first surgery Steven and I were both home. I did also give birth to Charlotte in the middle of that but we were two stay at home parents. For several other surgeries Steven worked from home. It was all a heck of a lot harder when Steven traveled and I was home with all the kids on my own and when Steven worked a regular job that he had to show up at. His working from home made so many things so much easier.

I must also note that just about everyone else seemed to have hard periods to, for a multitude of reasons. I didn’t think everyone else was having an easy time parenting because they didn’t have a fixator on their kids leg. In fact in some ways I think I had an easier time than some because I had real shit to deal with so I did not need to make up problems or stress the small stuff. That might sound awfully judgmental but I can see it in myself, that when I don’t have big shit happening I can obsess about some seriously little shit.

It’s not easy though. There is nothing really actually easy about leg lengthening. Of course I have been quoted as saying “It’s the easy part” but that is in comparison to joint reconstruction.

Lengthening still seems like a miraculous sort of thing to me. Cut a bone, separate it a little each day and it fills in. Super ankle feels less miraculous. Maybe because Nick’s foot has not been an easy fix. Maybe because it is still causing him pain. Nick’s knee is causing him pain too, again. He couldn’t get through more than a 1/2 hour of swimming on Monday night because of it. Swimming was the thing he could do without pain and this knee pain has been reoccurring for a while.

This stuff is difficult. I might have neglected to remind you but I have also neglected to remind me. I feel a little pissed off at times when it’s hard for Nick and I can’t fix it or I don’t want the fix that Dr. Standard can fix it with… surgery. It’s just the mood I am in but I have faith that time will pass, problems will be solved and the memories will soften until I forget and have to come here to remember.

Quick Update

As I posted previously, on Monday Nicholas began doing 4 lengthenings per day. First of all Nick really is doing it all on his own. I just pass him the remote which he calls the .25 2.0. The new remote is so easy for me to lift one handed (which I have another week of doing as my arm recovers from surgery). It actually seems faster than the old remote but I am not sure if that is true.

Also Nick has not had pain meds in days. I thought he would have more pain doing more lengthening but so far so good. It’s not that he’s been totally pain free but it’s been manageable. PT is hard! His knee does not want to bend much but I think we are making progress and I know we are not sliding back so it’s ok, whatever it is.

Stairs are really not working for him right now. He walks great with the crutches but stairs are rough which means we are pretty much home bound when Steven is not home. Thats getting harder to handle. I really want to try to get him out more!

So while lengthening is going great losing Monk has been hard. I have this terrible ache in my chest that I did not expect. Not at all. I know so many people have lost pets and know what its like. More and more I feel like we really were one big pack and he was an integral part.  Such a peaceful presence and he was our little watch dog. Seriously, though he was small he was always watching. His absence is just painful. There is no way around it.

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Video Update: Talking About Stuff & Things

Here’s what Nick was trying to show you in the video:

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And for our Spanish speaking FH family:

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This was requested by a mom from the Fibular Hemimelia and Limb Lengthening Awareness Group. The FH warrior label did not appeal to me at first but I was totally happy to make it for her and the other families. In fact it made me feel really happy to do it. I love our group so much but word wise “warrior” wasn’t my thing. I am more about being at peace with, living with, working with fibular hemimelia but when I showed it to Nick he liked it a lot. He said “Warriors brave the storm of pain and sadness that comes with fibular hemimelia and then find their is a Silver Lining.” (Thomas the Tank Engine reference) I asked what the silver lining is and he said “That you have equal length legs and scars to prove that you braved the storm of fibular hemimelia. Like a warrior returning from war.”

So there you have it. I am off to do a web chat. Nick is doing homework and we’ll post again soon.

Advancements happening in Baltimore

http://www.lifebridgehealth.org/Main/PressReleases/Rubin-Institute-Surgeons-Perform-First-Surgery-in-429.aspx

Smaller Precice means access to internal lengthening for more kids with fibular hemimelia as well as other limb differences. Nick will have internal lengthening if the tibia and femur in a few years. He’s in a real lul surgery wise right now and we are so grateful.

Nicks doing great, in case you were wondering. He finished his extracurricular basketball season,
started swim lessons at the YMCA again and looking forward to swimming with the Arden Sharks this again this summer. He’s still waiting or his new brace, as part of the trial, to be ready. He snapped the first one but we are still so exited to be helping create something to help kids with FH grow into adults with great functioning limbs!

One important afterthought: the Precice won’t eliminate external fixators. For one thing it can only do straight lengthening so so it can’t be used on a bowed tibia. And some doctors prefer external fixators for the super ankle surgery itself. The important thing is new methods and options are becoming available! Who knows what the future will bring. 10 years ago this was a dream and now it’s reality.

Leg lengthening number three is over!

Nick’s leg is healed. His arm is healed too. In the words of Dr.Standards PA Allison, Nicholas is “super healed”.

Super healed!

No more braces or boots!

Super healed!

His right foot even grew too big for his summer shoes. I can’t remember his right foot ever outgrowing a shoe before his left. It’s pretty amazing.

It was a happy RIAO visit… my boy didn’t want to leave. He was enjoying the cable tv and he made another friend with a broken arm. I guess it’s not such a coincidence at an orthopedic clinic but it’s funny to me. Nick was a little sad not to get to see Dr.S (he was in surgery) but he said “I really like Allison. I mean I like her like a friend”. I think he thought I thought he meant romantically. LOL

I have waited for this day since January when the mega fixator was put on. I have dreamed of hearing that the bone was finally healed and it’s here. Nicholas is so happy. He was running down the hall at the the RIAO.

Without the boot on his gait is off but it still feels funny to him to walk barefoot. We’ll give him time to adjust and get physical therapy down the road if needed.

I am listening to the kids playing and need to put them to bed but at the moment, in addition to feeling elated I am exhausted! The emotions of the day, the drive, it all wears me out. What a great reason to be super tired.

Super Healed!

If I had the energy I would write a love note to the RIAO! I am already thinking of doing something special for the all the folks who saw Nick through this. It takes a village (and one wizard of a doctor of course). I can’t name you all but so many people helped us get through this (almost a full year of ups and downs).

Thank you!

17 centimeters

Adding up the length from each surgery Nicholas has gained 17cm through leg lengthening. I think he still has 7 left but that can all be done internally. This was the biggest surgery and it is over. Dr.Standard removed Nick’s fixator and put a rod in his tibia this morning! Like most of his past surgeries this has gone pretty smoothly. I did not really cry in the operating room when I left him. Usually the walk back to the waiting area is so hard but I asked the fellow who walked me back what his plans were because I knew his fellowship was ending. He told me that his next fellowship would be in trauma. I said “Trauma really? This is traumatic enough for me”. I guess I must have been ok if I was making jokes!

Since at our last appointment we didn’t have a set plan for removal I really didn’t ask many questions about the rod and for whatever reason I did not realize Nick would need to stay overnight. It has actually worked out so well! At least here at Sinai. I hope the kids are doing ok in PA with Grandam and Grandpa. They sounded great when we called them (they sang happy birthday to me) but I hate to be gone longer than we said we would be. I am so grateful that they are with my inlaws, otherwise Nick and I would have been alone and not had an awesome birthday dinner and movie night here in room 3122.

Nicholas has not been in pain at all. I did ask for his pain meds to be given because I didn’t want his blood pressure going up like last time. Still he seems tired but ok. He is so happy to be fixator free. He was even so calm this morning. He didn’t have happy juice or anything before surgery and had an anesthesiologist today that he had not had before but he was a really kind man. There were plenty of other familiar faces throughout the day. It is still surprises me how familiar this place is and how comfortable we are here. It’s nothing you expect in life but hay it is what it is!

When Dr.Standard came out to tell us how everything went he explained why Nicholas would need to stay over night. It’s really just the antibiotics because of the rod. He has a protocol he follows and I would not question his methods. That conversation we have each time when surgery is done but Nick is not really out yet is such relief. Once I see Dr. Standard and he says everything went great I finally exhale! We always talk a little about whats next but this time whats next should be really far away. Nick can have the rod in for years if it does not cause any problems.

Dr. Standard has been Nicholas’s doctor through this whole journey, each surgery has been at Sinai, each time we have family and friends helping along the way and every outcome has been excellent. Every day I am grateful. Without the love and support of so many people this really would not be possible. Nicks right leg may be longer or he’s finally even. That is amazing! If he had had no surgery his right leg would already be almost 8 inches shorter than his left! That seems crazy but thanks to 17 hard earned centimeters Nicholas has a far different reality!

Summers of Surgeries

Some days I really can’t be positive. So I keep quiet. It was a rainy day anyway. No need to venture out into the world which is good because I happen to be pretty annoyed at the world. I am just tired of Nick’s summers being so surgery filled. Last year on June 17th (his baby sisters first birthday) it was the knee. This year on June 22nd (my birthday) it will be fixator removal. I could add previous surgeries to this list but you get the picture.

As much as this is a surgery to be celebrated it is hard because we have no idea how he will feel after it. He might now want to walk for a while. The rod could cause him pain. Who knows! I just want Nick to be able to relax and just be a kid for a while. A really long while!

I also sometimes realize how much it impacts the other kids. We wont be going to amusement parks until Nick can go on rides. Would it be more fair to take the other kids and leave Nick behind? I don’t think so. Is it the end of the world not to go to amusement parks? No but when I think of how few times we really have gone it is kinda sad. There are other things I don’t do because it is hard with 4 kids (and really it’s just hard cause one is in a fixator and one is about to turn 2). The kids also have fifth disease and the rash from it seems to be gone until they are out in the sun and then it is red and itchy for a while after.

I guess we’re home bound and a little stir crazy. I took them to Target yesterday and the best part was that I could get them all in one cart. People found the sight of us quite amusing. Big kids, little kid, baby and stuff all in one cart. I counted pushing it around as a workout for me.

I think the moving factor is changing this summer too. We’re in a kind of limbo and I am tired of it. So really I am just complaining which is a waste of time and energy considering the kids are asleep and I could be asleep. Plus I realize I have much to be grateful for. I just wish this summer was easier for my boy and I guess the rest of us too.

The home stretch… I hope!

So this should be the home stretch. Nick had an appointment with Dr.Standard Thursday and the smile on Dr.Standards face while looking at Nick’s leg really says it all! His right leg seems to be about 1cm longer than his left! This was unplanned and unexpected. It also made the news that Nick’s bone is not consolidating as well as we would like much easier to take. There’s really nothing wrong. It’s not really been that long but we still hoped for more.

The fixator could come off next month as planned but Nick would need a rod put in his bone to protect it. I’ve heard this is often painless and no big deal but sometimes it can lead to painful setbacks. As in the past I am inclined to let Nicholas decide what to do. His options being 1) take off the exfix and have rod inserted or 2) leave the exfix on another month or so and then hope he won’t need rod at removal or 3) just wait till the bone completely consolidates.

So far my boy has chosen option one. He’s seemed a little down lately and I think loosing this hunk of metal would help! He also still has pain in his foot when he walks, which the weight of the fixator could be contributing to. His new shoe insert helped with the pain in the bottom of his foot but now his heal hurts because it makes his shoe a little too small! I’d really like this insert to work out! Nick needs to walk pain free! And considering it was over $400 and not covered by insurance it would be a pretty penny to have spent!

On the home front the specifics of our move are still not settled and Steven is obviously still traveling and I’ve been unraveling just a little bit. I think I jinxed myself with my mental health post. I’ve gone back to therapy and even just one session was helpful. I needed to hear that all my stress and feeling’s about surgery/moving were ok. Why do I need professional to tell me this I do not know. Maybe it is too darn hard to admit to those I’m closest to that I am struggling (well some of you know and now anyone who bothers to read this knows). I often think I should be able to handle this or I just don’t want to ask for help. I hate asking for help. Maybe that’s reason alone to go to therapy.

So right now I am doing my best to simplify and say no to anything that will add stress or items to my to do list that are not necessary. The definition of necessary at the moment is “what my family needs” and of course friends if they are in crisis. Otherwise I am not available.

I’ve even taken a Facebook hiatus. I have Steven checking in on Fibula Hemimelia and Limb Lengthening Awareness. I feel a sense of responsibility for the group I created and I want to make sure folks are getting what they need. The group has over 540 members! Its awesome and seems to really be helping families connect and face the future.

My tenure as board president of our church is ending just in time and I’ve not been called in to the nursing home, where I am a companion for dying folks, in a while. I’ll hate to say no to that if they call but the times I go are usually at night and I need to sleep more! Plus there are others in the program they can call on. I am so grateful for the time I’ve spent as a companion. I hope to find similar volunteer opportunities in Delaware.

So while much of our future is unknown I am comforted by many things, including the cute little boy next to me who needs me to help him play Mario vs. Donkey Kong on his Nintendo DS. Time to get to what’s necessary!

Special Needs Mom

I’ve written about the word disability in the past and how I’ve not felt it was an apt word to describe Nicholas. I don’t think I’ve written about the label “special needs”. I’ve resisted this one in the past as well.

The first time I heard it used to reference Nicholas is when a mother I met at a play group was asking me about Nicks’s leg and she said “My daughter Ann’s special needs too”. I was taken aback. I wasn’t insulted but I simply had not considered Nicholas a speical needs kid. At that time the only special thing his leg required was a shoe lift. That didn’t seem so special to me.

At the same play group another mother was starring at Nicks shoe and very loudly said “Wow, that kid is wearing moon boots”. She somehow failed to notice that only one shoe had a lift! I wanted to scream! I wanted to punch her! What I actually did was nothing. The “special needs mom” changed the subject and over five years later it sill bothers me. Mostly because I didn’t say anything! I froze.

Thankfully I never saw the rude mom again! She really was aweful beyond the moon boots comment. Still I was left with more to consider. Was Nicholas a special needs kid? Was it just another label? What did it mean?

Physical Disabilities by Lynn Moore
Physical disabilities include a wide variety of conditions that affect a child’s movement or ability to accomplish some physical task. A physical disability might be a condition that is addressed with physical therapy or some assistive device, or it can be serious enough to be life-threatening. Defining Special Needs at Netplaces.com

I guess a shoe lift isan assistive device. Sometimes Nicholas also needs an AFO (brace on his ankle). Plus the external fixator he is wearing right now looks pretty darn special to me…

Terri Mauro on about.con writes quite well on the topic and points out the functionality of the term right away. One Term, Many Definitions:

“Special Needs” is an umbrella underneath which a staggering array of diagnoses can be wedged. Children with special needs may have mild learning disabilities or profound cognitive impairment; food allergies or terminal illness; developmental delays that catch up quickly or remain entrenched; occasional panic attacks or serious psychiatric problems. The designation is useful for getting needed services, setting appropriate goals, and gaining understanding for a child and stressed family.

Common Concerns:

Although every special-needs child is different and every family is unique, there are some common concerns that link parents of challenged kids, including getting appropriate care and accommodations; promoting acceptance in the extended family, school and community; planning for an uncertain future; and adjusting routines and expectations. Parents of children with special needs are often more flexible, compassionate, stubborn and resilient than other parents. They have to be.

“flexible, compassionate, stubborn and resilient”… If that is how a special needs mom is defined sigh me up because I hope I’ve got those qualities down! When you have to face surgeries and stares from strangers and your sometimes suffering child you need have those qualities just to get through the day! Moms of special needs kids have to hold it all together. We also have to know how to ask for help but that’s another blog post!
You can read the entire article here:Special Needs About.com

So where does all this leave my boy? Probably the same as he has always been. Eight surgeries in as many years, regular two hour road trips to The International Center for Limb Lengthening probably speak for themselves. It’s been a pretty special journey and Nicholas is beyond special and beyond my wildest dreams of what a son could be!

And if I had any doubt about wether I am in fact a special needs mom here’s some evidence… Plus Love That Max is a great blog by another special needs mom. As far as labels go I sure am in good company!

More good company… my fellow readers choice finalists!