Its all in the details.

Sometimes it seems like the little details of a hospital stay are the make or break things. Surgery is important and the point of course but during surgery Nick is asleep. Waiting is hard but someone else or rather a whole room full of people are taking care of my boy. The fact that I trust Dr. Standard and his team makes all the difference.

Recovery or the PACU seems to have it’s own series of concerns. The first thing I consider is how Nicholas wakes up. If they let him wake him wake up on his own he does much better. Every time that I know of that they have woken him he ends up so upset! The last few times in recovery have been much calmer. The other recovery factor of course is pain management. That’s probably the most important but when it’s going well it is easy to overlook. Sinai has always done a great job in that department.

The anesthesia department has been great about doing things in a way that works for Nick. He’s gotten a little big for the happy juice to help much and at first they have at times tried to give him an iv before he’s in the operating room. Its not necessary though because thankfully Nick is really calm and even when he’s nervous I am able to help him. That by the way is the best feeling in the world. Knowing I can help. Knowing what he needs and knowing he trusts me. The regular everyday moments of motherhood are often the best and most special things to me but the hard times, the times when I am in the zone. It’s like extreme mothering and so far I have passed the test.

Recovery is mostly waiting. If it’s a fixator surgery there is that first look. Even though it is wrapped up it’s still sometimes hard to see. It’s also an anxious time as a mom because I am mostly hoping Nick stays asleep but also wanting to hear him say he’s ok and tell him I love him. Waiting for all the necessary prices to fit together so Nick can be moved to a room can be tricky. Dr. Standard’s team need to put the orders into the computer. Anesthesia needs to sign him out and they can be hard to find. Then the PACU nurse needs to give a report over the phone to whoever will be his nurse once we are on the pediatric unit. Said nurse has other patients too and needs a few free minutes to take the call. So more waiting.

After that all happens we travel. It’s a bit of a trip at Sinai with the new children’s hospital being a bit far from where surgery happens! This time we were derailed by one of those medicine delivering robots so the trip was even longer.

Arriving in Nicks room is such a relief. I set up our stuff, turn on the tv and answer questions. Likely questions I have answered multiple times already but that’s ok. Once Nick is settled we move on to ordering food! It can take 45min to an hour so we need to be on top of that.

The rest of the important details include the iv. As long as it keeps working as it needs to it’s great. If there is any chance it will need to be replaced I have a plan in my mind to refuse unless it is absolutely necessary. That’s when I will loose my good reputation here at the hospital.

Needing a blood draw can be a problem too. Nick’s veins just don’t cooperate often. Though last night the fabulous superhuman nurse Melissa used Nicks foot and was quick and practically painless. I loved her so much in that moment. Thank you Melissa. I still love you just thinking about it. Melissa was altogether great. But so were the other nurses Nick has had. Sharon was his nurse all day today and she was amazing. Some people just do their job with such ease they put you at ease. That was Sharon.

PT and OT are important details as well. Nick got a reprieve and didn’t have to walk today since he has an epidural but he did have to get out of bed and into a wheelchair and he did not want to. Sometimes I have really just wanted PT and OT to leave him alone but I do try to be compliant and helpful! I think I did pretty good this time. When Lisa told Nick that if he got into the wheelchair he could go to the play room, Nick said he didn’t want to go to the playroom. I knew he was scared and I talked to him about how experienced Lisa and Laura were and how much better it would be for them to help him move as opposed to us moving him later because even if we didn’t go anywhere he had to get in the chair. This kind of convincing does not always work but this time it did.

I do not envy the physical and occupational therapists in what they have to do and the opposition they may face from the child and parents but they do amazing work. I don’t think I could make a crying kid sometimes with a big ex fix on their leg stand up and even walk!. When Nick was a baby I had times where I had to walk away and cry. I don’t think those moments are totally behind me but I realize if I cooperate Nick is easier to bring around too. They have reasons for doing what they do and really trying to make Nick walk for the first time by ourselves would be harder.

Epidural removal and catheter removal are big details too. Sometime the catheter bothers him. This time he wanted to keep it for convenience sake! Of course once it was out he realized he was better off but I think he feared the removal so much he convinced himself he was better off with it. It hurt being removed which everyone says it shouldn’t but it does hurt Nick pretty consistently. The epidural removal however was nothing this time. Even the tape pulling wasn’t too bad! That was it’s own little miracle!

Another potential IV issue is the way it feels when certain meds are pushed in. Apparently some people never feel it. Nick always does and some things burn. In fact I will have to finish this post later cause it’s iv antibiotic time and it’s feeling really cold in Nicks hand. Got to go!

Amputation Versus Lengthening Again


Lives of great men all remind us
We can make our lives sublime,
And, departing, leave behind us
Footprints on the sands of time;
Footprints, that perhaps another,
Sailing o’er life’s solemn main,
A forlorn and shipwrecked brother,
Seeing, shall take heart again.
Let us, then, be up and doing,
With a heart for any fate;
Still achieving, still pursuing,
Learn to labor and to wait.

A Psalm of Life has struck me today as pure brilliance. In that Oprah ah-ha moment sort of way! I guess I always like a footprints image. Maybe because of Nicholas’s unique foot prints. I do like to imagine that others will have an easier time on this particularly unique road through fibular hemimelia becaus we have shared and left our footprints behind.

There’s a conversation on the Facebook Fibular Hemimelia and Limb Lengthening Awareness page that’s taken on a life of it’s own. It’s the amputation versus lengthening question. It’s awful to read some comments which are neither personal experience nor fact based but it is what it is.

What it really is, is a very emotional question. When you have doctors tell you that there is no right choice, it really does not make the decision easier. I’ve said before that this is a choice parents should never have to make. To keep or amputate their childs limb. Never mind that there are likely doctors strongly advocating one option or the other. While they say it’s your choice.

Really, what happened to “there’s no right choice”? Of course a doctor is likely to think the treatment they are familiar with is better. First of all its what they can do. Secondly they have seen their patients thrive. They’ve watched the two year old with her first prosthetic leg taking her first steps or the two year old after her first super ankle surgery and lengthening doing much of the same. Really as hard as it is to believe kids really will be ok either way. They will find their way, accept their difference and live their lives. Thank god for that! It’s not easy but children are amazingly adaptable.

Still there will be moments when as a parent you will have to explain your choice. “You were born this way” or “God made you this way” will only fly for so long. One day you will have to face your child and say “We chose this for you because…”. You will owe them the truth. You can’t make a choice like this about another persons body and not explain it. I’ve had this conversation with Nicholas. He knows that amputation was the alternative. So far he feels we made the right choice. Had we chose amputation would he feel the same way? I think so and hope so.

Once you make the choice you have to make it right for your child. I am sure most people do just that. But we all then become attached to our choice. It’s impossible not to get defensive when I feel someone is suggesting parents who choose lengthening are choosing hell or torture. I try not to. Sadly reading that a child with an over 20cm difference, needing multiple ankle surgeries, and a super knee and an eight plate, who has two toes, etc… reading that this child, my child, could be doing great makes people who chose amputation for a similar or lesser level of deformity get defensive. I get it. Doctors told them it wasn’t possible. But it is.

Just because it’s possible does not mean I think parents who choose amputation are making the wrong choice. Just don’t come to a support group and say lengthening is not an option in such a case. If you were told it wasn’t an option for your child say that share your family’s story. Maybe your footprints will help someone else take heart again!

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!

No Fibula, No Problem has been selected as a finalist for “Favorite Special-Needs Parenting Blog” in the About.com Readers’ Choice Awards

About.com 2012 Readers' Choice Awards

This is a fun post to write. As the title states NFNP is a finalist! I am so excited. By virtue of being a finalist many folks who have never heard of fibular hemimeila will now know it exists. Maybe folks who need resources will find them. Maybe some parent with a child with a limb difference that’s not necessarily fh will find this blog and know they are not alone.

When I began I wanted parents to be able to find information on FH and the limb lengthening reconstruction option. The web has come a long way and there are now many blogs by families with children with FH and even blogs by young adults with FH. I am in good company!

Please consider voting for No Fibula No Problem at the link below. You can vote once a day, every day through March 21.


http://specialchildren.about.com/od/readerschoice/ss/2012-Readers-Choice-Awards_2.htm

Thanks to everyone who nominated us and thank you in advance for voting!

The joys of the shuttle bus!

Last week I took Nick to Geisinger to get fitted for his shoe insert. Normally we get orthotics in Maryland but I figured we might need to go back and forth to get adjustments so why drive at least two hours each way to do so. Plus Geisinger has a great orthotics team. The gentleman who helped us was great. He really took the time to think about how to make an insert that would actually work. Sounds like common sense I know but still, he really seemed to do a lot of thinking. He was also great with Nichols.

Geisinger Medical Center is huge! I’ve been to various buildings for various reasons and often considered my walk to and from the parking lot enough exercise to actually say I exercised! Nick was using the walker when we went so I thought at first to use the valet but he did not want to. The shuttle bus was a necessity for us but it was also wonderful! Nicholas loved it! The bus driver seemed to love his loving it and so did I! On the way back to the car we managed to get the same driver!

The bus began to fill up quickly and a man sat down behind Nick and started talking to the person next to him about how he had part of his left foot removed due to infections (he’s diabetic) and now great he has felt since. Nick turned around as soon as he heard that! He started trying to tell him about his Fibular Hemimelia but he was so surprised he was having trouble finding the words. I helped a bit and soon several of us on the bus were chatting and Nick and this kind man were talking about what they have in common. Then he told us a story his mother told him about wanting new shoes so badly as a child till she saw a man with no feet. Moms get to use proverbs and fables as they like! Clearly her parenting was effective. This man was so joyous despite his own trials and despite the fact that he was visiting his mother in the hospital because she was having part of her leg removed.

These moments give us all perspective. Nick chatting with this man about their differences made me feel so much joy. I hate that he is having pain right now but I am so proud of who he is! Nicholas is so kind and social and open. He’s secure in who he is. He’s also only eight! But this really is what I hoped for more than anything as a parent, to raise him in such a way that when it was time for him to be out in the world he would feel secure.

Nick’s teacher wrote to me about his day today and mentioned the fact that he has an awesome attitude about all of this. He really does not complain. He does not whine (at least not about his foot). Oh maybe I need to stop going on and on about my boys awesomeness… I do a lot of that here don’t I?

Chats, blogs and support groups oh my!

There is nothing that adds more joy to my life than my family but sometimes a good web chat can be pretty great. Helping on the chat is fun. I do take it seriously if I am in charge of the line or order in which people ask questions. Last night chat was sort of festive. It was both social and informative. It included people from as near to me as my own state of PA and as far as the Middle East. Folks on chat don’t always get the answers that they are looking for since a web chat it so not the same as a clinic visit. Still I think most parents new to the world of limb differences leave the chat feeling less alone and even with a little hope.

The best chats, at least for me personally, are the ones at which someone mentions how much this blog or the Facebook FH group helped them. That is an amazing feeling. Knowing to an extent what folks are going through and at the same time knowing I helped them in anyway is awesomely fulfilling. It gives me a great sense of purpose! It makes something good come out of what Nicholas has had to go through.

Frankly I do think that just living is a pretty great purpose. Just the fact that I’m sitting here, baby at my feet, preschooler off playing, two kids in school, coffee next to me, husband working in his cave of an office below, it feels like a good life with plenty of purpose!

Our recent employment shake up has created a whole new set of possibilities for us. A friend gave me a special little something and on the back it says “when nothing is certain anything is possible”. At the moment that feels true.

A few weeks ago I posted some info on Facebook about a chat I would be atteding that night and a friend commented ‘this is the work you should be doing’ or something to that effect. It was like a little light bulb moment. I thought ofcourse this is work I should be doing, its work I am doing but I am a volunteer.

Fast forward a few days and I find a job posted that is in fact doing this kind of work. It felt like fate. Like a message. Like a dream.

Next week I have four interviews for a job, or really a career. I would be using my experience as a parent of a child with FH, my passion for supporting others (like chats, blogs and support groups) my psych degree, my volunteer experience and even my desk top publishing a bit too, all for a position in which I would help patients and families, help others help them, help them help each other and themselves. It’s Patient and Family Centered Care.

Now I know the job is not mine yet. I might not even get the job but I do feel good knowing there’s this possibility out there. Having Nicholas changed my life as becoming a parent does for everyone blessed enough to get to do it but it’s more than that. I think having Nichols born with FH has given me the opportunity to really grow as a person and become more of myself.

I know I’m not the only person whose read countless books and articles on career paths and choices but today I feel like Dorothy (I know how cheesy and cliché this sounds) but I do feel like Dorothy who had the ruby slippers all along. I’m meant to do what I’m doing and loving. I’m meant to use my life and talents and who I am to help others. It’s not all easy. It is even a little scary but its who I am. Isn’t that what we’re all meant to do? Ok it’s what Oprah says and while not everyone loves her like I do, I do think she’s on to something. Live your best life! Who can argue with that motto. I’m on my way! How about you?