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!

It’s super quick! Britney and Gracee need your help. A two second vote will do it!

please vote now!

If you didn’t vote yet, please read Britney and Gracee’s story! I know you’ll vote after you do! Britney needs this van to continue to do everyday things with her daughter. How many of us take the every day for granted? Next time you’re frustrated by your wiggling child as you try to buckle them in their carseat, think and realize how blessed you are! I do not know Britney but I can tell just reading what her mother posted, that she feels blessed too.

“My daughter Britney Sadler is my hero. Her daughter Gracee, has a muscle diease called S.M.A., which there is no cure. The doctors told britney that gracee wouldnt make it to see the age of 2, and she is now 5! Gracee is beating the odds because of her mom. Britney is why gracee is so happy and britney is gracee’s 24/7 mom and her 24/7 cargiver. Gracee living with this disability, has made britney the caregiver and person that she is today. Gracee can’t swallow, eat, sit up, cough, spit and she is bipap dependant beacause she can’t breath on her own amoung many other problems as it affects every muscle of her body. Gracee is getting ready to get trached in st. louis for better breathing.Gracee is transported in a cart in which she lyes down and the bottom of the cart holds a few machines and batteries to help her live. she is heavy to push and manuver but gracee gets to go and do because of britney. britney has to pick her up and put her in the bath because she has no lift in the house to assist in that area. also, they have an older van and we had a ramp made to ge gracee in and out of the van. However, gracee is growing and had to get a bigger cart snd now it’s very hard to get her in the van as her wheels on her cart keep hitting the sides of the ramp, so it takes a few times of pushing and pulling to get gracee in the van. BRITNEY does whatever it takes to get gracee out to school and other places so that gracee can lead as full life as she possibly can. Britney is an amazing mom and everyone always tells her how wonderful she is. Britney has totally put her life on hold to care for gracee. She doesnt get to do all the things a 24 year old girl gets to do. Britney gets left out alot because she cares for gracee but she never complains. But she would’nt have it any other way! For this and much more, I would like to nominate Britney and her family for a new van. It would be a miracle and blessing to be able to make life alot more simpler for her and this struggling family. Thank you”

Back to School?

Yesterday I asked Nicholas if he felt ready to go back to school. His response didn’t surprise me much “Yeah Mom I’ve only been waiting for you to ask me”. I’ve made an appointment for him to get fitted for his shoe insert on Thursday and I think Friday he’ll go back.

Nick is ready. I am not. I am so happy having him at home. Aside from it being hard to get out and about. I suppose I will be able to get more done during the day. Still I will worry! To be honest Nicks at home instruction experience has been one of the reasons I have decided to homeschool, or at least to try it for a year. It sounded a little crazy to me at first. Even felt crazy to be considering it but the more I research the more I want to do it. I don’t think public school is evil or anything. I do think it’s an awfully long day considering Nick could learn everything he needed in an hour or less. It’s just not the only way to learn. Once you start thinking outside the box it’s hard to get back in!

I would also love for my kids to have some choice in what they learn. I would love to have more time with them. Being gone seven hours a day five days a week changes things. I am often sad that Charlotte is in school while the rest of us are at home together. I know it suits many people just fine but it’s never sat well with me. I never look forward to the end of summer. I don’t think it’s as easy as people say it is to have your kids in school. I know I have taught them many things, I fell confident we can learn together. I know I will have to work hard and be disciplined. I believe it’s worth it.

This is not to say that I don’t love and respect teachers. I know what they do is takes it’s own skill and education. It’s just not the only way to learn. I don’t compare myself to teachers at all. My kids have had amazing teachers. Really! I have loved them. Nicholas’s current teacher has literally been perfect. She was the turning point when Nick came home from surgery and wasn’t himself. She makes schoolwork fun. She is a beautiful, smart and kind person. All you could ever ask for.

Sadly she and many other teachers in our district are either loosing their jobs or being shifted around. Like many areas, central PA schools are suffering financially. My children have a wonderful school. I respect the principal and pretty much all the staff I have encountered. They have all been kind and helpful in handling Nicholas’s surgeries and anything that has come up. But with these cuts I know the school will suffer. They will be loosing some amazing educators. How could the school not suffer?

Many experts say our education system is broken. I’m not going to worry about quoting anyone here. You can google yourself. When my husband and I tell people we’ll be homeschooling the only real argument against it we get is “what about socialization?”. If socialization is the best thing a kid can get from public school there’s more wrong than I thought.

All I know is it feels right to us. We’re moving to an area of Delaware with so many amazing homeschooler activities and groups. There’s a coop, there are weekly playground dates, monthly roller skating, and many other group classes and activities. We’ve received invites to a beach day, canoeing classes, a family farm day and more. We won’t be sitting at home reading textbooks. We’ll be living and learning together and in community with others. There’s even a yoga and meditation class this month for 6-9 year olds! In addition to a class at the Apple store on Garage Band. I wish we were there already to take these! Really there are so many different things. I am sure we won’t be able to do everything because of time and/or money but there are options.

So hopefully Friday Nick will go back to school. At least for a few weeks. School here ends in the beginning of June. He’ll likely have his fixator till after the end of school which could work out since removal would have been more missed school!

I am so nervous but if he feels ready I have to be ready to. When we told Charlotte she hugged him so hard she could have knocked him over! Still as happy as she is going to be is comparable to how sad Christopher will be when his big bro is gone all day. He and I can comfort each other!

Two More Months

Thursday Nicholas had an afternoon appointment with Dr. Standard. His x-rays looked great. His leg looks so very long and straight! The bone is not filling in or consolidating as fast as I planned for it to so while I thought Nicholas had about a month left in the fixator its’s actually two. As has happened in the past my plans and reality just don’t match up!

In the long run this could work out better for a couple of reasons. One ofcourse being the longer his leg is in this pricey hunk of metal the less likely he is to break it when it comes off. Dr.Standard knows what’s best in this area. The last thing we want is for Nick to have a fracture after all this is done! So that’s that. Plus if we wait long enough Nick may be able to go from fixator to removable cast! That would be wonderful in comparison to giant cast which is not removable. I imagine Nick sleeping and bathing and swimming with his leg free and it makes another month of the fixator feel even more worth while. As if the bonus of not breaking his leg wasn’t enough!

Thursday’s visit was even better because our cousin Kent, Auntie Liz and Uncle Jim were there too! Kent sees Dr.Standard for Perthes. I’ve probably written about that before but the fact that Dr.Standard is the best person in the world for Perthes and Fibular Hemimelia is pretty awesome. Kent is doing great and had his own wonderful appointment. He is Nicholas’s idol. They were finishing each others sentences. I love seeing them together almost as much as I love being with my Aunt and Uncle! A hug from someone who loves you and knows you so completely is a little piece of heaven to me. Nicholas has been big into hugs these days, which is fine with me! I’ve got him saying “A hug and a squeeze if you please”, a phrase from my childhood that can feel so bittersweet with so much of my family gone. Hopefully resurrecting it in our house can make it more sweet than bitter.

So all in all Nicholas is doing well. He’s walking much more than he was. We do have go get him a shoe orthotic/insert though because he is still having foot pain when he walks, even for a little while. If the insert works I will try not to worry. Dr.Standard says he just may not be a barefoot person. But Nick really likes being barefoot now so needing an insert long term could be upsetting to him. Sometime next week we’ll have to go back to Maryland to get it since we were not happy with Geisinger’s work with the last insert. It didn’t help at all and from what Steven told me the second appointment to get it did not go well. The first had been great.

In addition to going to MD for the insert we’ve got to go to Delaware to check out houses. Steven’s working three days a week there now and it looks like come June, it will be five. I try really hard to be positive and not think myself into misery but right now having him gone so much feels like a lot. With Nicholas not totally mobile we don’t leave the house more than we have to (when Steven’s not here). I can’t push Nicholas in a wheelchair and Bess in the stroller at the same time (there’s also Charlotte and Christopher to keep track of). I do my best not to be grouchy the kids (or in the least apologize when I am) because of the daily frustrations. It is hard enough for them when Steven is gone!

Nicholas and Charlotte are not happy about moving. Steven and I are just going with it. Trying to see the positives. There really rare positives. But to move forward we’ve got home projects to finish so we can get this house rented or sold. Most of this is stuff only Steven can do, so even when he is at home he has regular work (since two days he works from home) to do and house projects and there’s regular day to day stuff! I still feel incredibly fortunate that Steven has a good job in Wilmington but the whole moving to Wilmington thing while Nicks still in the fixator with Steven gone so much already has added another stress dimension to our lives.

Managing the stress is the best we can do. Even when I am up till midnight with one crying or sleepless kid, or two, I still feel such gratitude. Ok maybe not every second but I am grateful for the moments of clarity when I see that if this is what a hard moment is for me, I am pretty lucky. If I am annoyed because I didn’t get the dish washer loaded I am lucky. If I am tired because I spent the day caring for my children I am lucky. How many parents face so much more and how many people aren’t here to feel annoyed and tired at the day to day things! I sometimes say “if you’re lucky enough to be breathing, you’re lucky enough” (I am sure it’s someone else’s phrase). I like Nicholas’s version even better “if you’re lucky enough to be hugged, you’re lucky enough”. Indeed!

Baby Blues, Blues and Blues Not Elsewhere Classified

Recently the mom of an infant with Fibular Hemimelia posted a question on a support group asking if was normal to be crying all the time. She received many kind responses but oddly enough mine was the only one that mentioned counseling or therapy having helped me work through the emotions of having a baby with a birth defect. I should not find it odd considering there is a huge stigma regarding mental illness. Not that having a baby with a difference and being sad about it should qualify as an illness. I didn’t suggest she get mental health help, I simply wrote that it had helped me. Maybe others had counseling and didn’t write about it or worse maybe no one else had any professional help at all?

When Nicholas was a baby I did not think I had postpartum depression. I didn’t have thoughts of suicide or of harming him. I was going to school, working weekends and taking care of my boy. I loved Nicholas and I loved my life with my husband but slowly and in such a familiar fashion this underlying sadness moved in. No one really knew. I didn’t talk about it. Functioning well hides a multitude of emotions. This mom from the support group seemed, from the little I could see of her life, to really be functioning well to, enjoying her baby, living her life. But that’s what I looked like too and I still needed help.

I was fortunate that when Nicholas was born I was in college (as a psychology major mind you… hello… if I hadn’t realized I needed help I’d have been in the wrong program) and I received free counseling. I needed to talk about my history of depression and having a baby with fh, I needed to talk about the decision we had to make (amputation versus reconstruction and leg lengthening) and I needed a neutral person. I was judging myself as much as I was afraid of being judged by others. I really thought that if I showed that I was sad or upset that Nicholas had a birth defect it would mean I didn’t love him enough. I put so much pressure on myself to keep it all together. I wish I had realized that there is no shame in asking for help. Nothing I was feeling was wrong.

Obviously not everyone who has a baby with a birth defect will have postpartum depression or depression of any kind but I still believe talking to a professional is hugely helpful, even just one session. Having a baby can open old emotional wounds. It is the best and most amazing experience but it’s an emotional roller coaster at best and an emotional mine field at worst!

This was not my first time in therapy. A few years earlier I was diagnosed with Chronic Depressive Disorder (Dysthymia). It’s a kind of milder long-term depression and I have probably had it since childhood. When I was diagnosed I was so relieved. There was a reason I felt the way I did. I wasn’t crazy and it wasn’t my fault. I bet I am not the only gal with a mental illness to have had those feelings! The psychiatrist I saw asked if I would consider an antidepressant but I said no and opted to try therapy alone. Here’s a little info on Dysthymia:

“Dysthymic individuals, on the surface, may seem to be fairly productive; they may be employed and involved in social and marital relationships. However, impairment of physical and social functioning, a requirement of diagnosis, is often more significant than it appears to be, and is often the motivate for an individual to seek professional assistance.” … “Dysthymia is often misdiagnosed and undertreated due to the low-grade severity of the disorder. Because the symptoms of dysthymic disorder have been apparent for so long, many people do not seek treatment, or they delay seeking treatment for 10 or more years. In fact, many patients who delay seeking treatment indicate that they do so because they believe depressive symptoms are part of their inherent personality. Most do not recognize that they are experiencing symptoms of depression.” Understanding Depressive Disorders

So while I didn’t necessarily have the baby blues I still had the blues. I went to counseling and saw my GP to get on an antidepressant. I started with Lexapro and that seemed to help for a while. Then I went off it to have our second baby, Charlotte, and went back on it a year or so after that and back off it to have our third baby, Christopher. I thought it worked well at first but eventually it made me tired and hungry (among other unfortunate side effects). Not exactly helpful when you are combatting depression!

I never went back to Lexapro but after my Aunt died three years ago (Nicholas had surgery for his 2nd leg lengthening two weeks later) I went to a psychiatrist to get help. This time I was prescribed Bupropion (aka Wellbutrin) and the current diagnosis reads “Depressive disorder, not elsewhere classified”. The medication has changed my mind for lack of a better fitting term. By the way I stayed on this medication through my 4th pregnancy and while nursing Bess.

On the Bupropion I feel like a different person. I don’t always feel good and if I did I suppose I’d need another diagnosis. I still experience the full range of human emotions but I am able to navigate them and not get lost in them. My treatment was considered a success and my depression controlled.

By the fall of last year my counselor and psychiatrist had been trying for months to spread our appointments out further but I was hesitant (they were already about two months apart). Finally as I left my last session (not planned to be the last really and I do have to check in to stay on my medication) I turned to my counselor and said “I know I am ok. I know I can function like anyone else (maybe better), with some of the most stressful life events happening all at once, I am not depressed” and my counselor replied “That is exactly what you need to hang on to and remember”. So I do.

Fibular Hemimelia Before and After

I’ve been asked to provide some before and after photos of Nicholas. That’s kind of hard to do since at the moment he is in a kind of before situation. Being that he’s currently undergoing treatment. It was even hard to find great photos from between previous surgeries. It really reminds me of the fact that between surgeries we don’t pay a whole lot of attention to his leg.

I guess that is truer at some times than others. The fall was hard with Nick having random pain for the first time. Between surgeries one thing that always reminds us of fibular hemimelia is shoe shopping! That seems like it will never be easy. And getting shoe lifts, which either seems super easy or a real pain. Once we find someone who does a quality lift at an affordable price we pray they will stay in business.

Apparently though Nick does not need a lift right now! He’s walking with the walker but still reluctant to put weight on his right foot. I worry he is going hurt his left foot with all the work it’s doing! Still he’s not terribly active right now and now that the infection is under control we’ve got to encourage him more (I guess the swollen red infection pictures are a kind of before. I should take some nice afters to go with them). Steven is away and told Nick that if he takes a few steps each day he’ll take him to McD’s when he comes back.

This time when this fixator comes off I will be sure to take lots of awesome after photos. I hope it will be a few years before Nick will need another surgery. Though the way my boy grows it is hard to imagine going too long without another lengthening! Hopefully I will get to posting some more before and after pics on this blog later today! For now check out the new header collage I created this morning between toddler temper tantrums, preschooler melt downs and eight year old whining (that’s what Nick has been doing whenever we have to go some place without his dad-evator (as in Dad as elevator)! Considering how little attention I had to give it I think the header is fabulous!