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.

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!