Oscar - Your questions answered

    Oscar is interesting and people want to know why and exactly what he has.  I understand that and so, since Oscar's condition is so rare and each case of PFFD and FH is different,  it is sometimes confusing to others so I've put down the answers to the most common questions I get asked about Oscar.

1)  Where's his foot?

He still has his foot.  Sometimes seeing him wear his prothetic people think he no longer has a foot.  His foot is in the AFO (Ankle Foot Orthotic) which is above pylon with the false foot.  We have not made our decision on keeping his foot but we are leaning towards lengthening.  He will have surgery when he is two on his hip, knee, and ankle.  After that surgery we will have a better picture of what we intend to do.

2) What toe is he missing?

 I can't tell you what toe he is "missing" because nobody knows.  He is not really missing a toe as much as missing an entire ray of the foot.  A typical foot has five rays, each one ending in a toe.  Oscar has a four ray foot.  

3).  Is his leg broken?

His leg is not broken.  The bend you see is just the way his tibia formed without his fibula.  It does not hurt him to have his tibia like that.  He has was born that way.

4)  Does his leg cause him pain?

His little leg causes him no pain on a daily basis.  He cries sometimes as all kids his age do for various reasons.  It is not because of pain in his leg.   If it did cause him pain I doubt he would do all things that he does.

     I do believe he has the world's 

     strongest big toe!

5)  Did he have surgery?

He has had no surgery yet.  The mark you see on his little leg is a dimple, a trademark of fibula hemimelia, not a scar from surgery.

6) Can they fix his leg while he is young so he won't remember?

Oscar's condition cannot be fixed with one simple surgery and his leg will never be completely like his typical leg.  He will require many complex surgeries over his childhood for him to have both feet on the floor, sometimes requiring cast, fixators, wheelchair, etc.  

7) Does he have a knee?

Yes, he does, it's just a couple inches from his hip since his femur is so short.  All his joints are slightly malformed and they don't quite work like the ones on his typical leg.  We hope to have them corrected when his is age two with SUPER surgery on his hip, knee, and ankle.

8) Why was he born this way?

This is a hard one for me.  While there is no known cause for this congenital deformity, I have often wondered this.   I have since made peace with this being a random occurrence but its hard not blame yourself especially when you first find out.  You knit pick even the most minuet detail of you pregnancy.  You get angry when you see shows where people pop out "perfect" babies even though they took no care of themselves while pregnant.  You think "Why my baby?".   Will finding the reason why change the fact that your child has this?  No.  When I look at Oscar, he is not mad that is the way he is, he does not pity himself, he just deals with it.  That is one of the many lessons Oscar has taught me.  While we may never know why, in the end, it really doesn't matter. 

Superstar!

A year ago I worried that new baby wouldn't be able to run and play with his brothers and sisters, that he wouldn't meet his milestones, that he would struggle to do things that come so easily to other kids.  None of these worries have come to be and Oscar is in fact a pretty typical baby and maybe even a little bit more of a daredevil than my daughter.  Oscar just got his first helper leg and we are gradually easing him into wearing it.  He is such as good crawler that wearing his leg and trying to walk is like taking a step back for him but he does see a benefit to it.  He doesn't try to take if off like I thought he would, its like he already knows his little leg should be longer.  

I thought he got a lot of stares before he got his helper leg but his leg has brought him a lot of attention!  A lot of stares and quick glances away when I notice.  Note to people who think you can stare inconspicuously - You can't!  I notice every stare, I just don't care to point it out to you that I notice.  Oscar must think he's a little superstar with all this attention and I think I'll keep it that way!  Just smile at him if you're interested to see his little leg or even ask me about him.  I'm a typical mom who loves to talk about her kids.  Just don't say "Aww, that poor baby." Oscar is rich with love from his family and everyone who meets him.  He is persistent and determined to do what he wants and that will benefit him throughout his life.

Here's his temporary leg.  A few more modifications and it will work great!

How could you not stare at this adorable boy? - just be sure to smile back!

Time for a helper leg!

Now that Oscar is one and standing quite well, it's time to work on the big milestone - walking.  Oscar's difference is too great for a shoe lift so we need a a special type of leg, kind of a half orthodic/half prothetic.  It will be an AFO with a hinge at the ankle to maintain what little mobility he has in his ankle.  Its been hard trying to find a prosthetist that can make this special 'helper leg'. We visited three places and were turned down by one and another one had just gotten his license and we needed a bit more experience for such a complicated prothetic.  We are going with Hanger in Tulsa and believe its the right choice for our area.  Its hard because in Oklahoma we don't have access to top notch specialist, not to say the doctors here aren't good, but they just haven't had the experience with rare cases as you would see in big cities.  I am already going to travel to Florida for Oscar's treatment, I can't travel far for a prosthetist as well especially when I will need at least 6-8 appointments a year with them.  I have to think about my family as a whole.  I'm a stay at home mom but I play a vital role in all my kids lives.  Yes, I will always do my very best for Oscar but I believe, in this case, it is to go to the best prosthetist close to us and keep any disruptions in oscar's life to a minimum.  I want him to live a normal life right now while he doesn't know he's any different than his brothers and sister.  He will need his first surgery between age 2-3 and its a very complex and long surgery so keeping life simple right now seems like the best choice for our family.  Right now I will focus on getting him his prothetic and a walker so he can learn to walk at his own pace.  I will be so happy when that happens!

Decisions for Oscar

I thought after this appointment I would have a clear view of what way we were going with Oscar.  Good news is that Oscar qualifies for lengthening surgery.  Bad news is that it will be very complicated.  Oscar will need four lengthening surgeries at ages 4, 7, 10, and 14 to lengthen both his femur and tibia at the same time.  He will have to wear a fixator for six months each time, three of which we will need to stay in Florida for many doctors appointments and physical therapy, then come back and have the fixator removed via another surgery and that's if everything goes right.  Lengthening with a fixator can have complications like pin infections, fractures, etc requiring more surgeries.  Before he can have any lengthening surgery, he will need to have surgery to reconstruct his hip, knee, and ankle.  All have deformities and need to have a specialize surgery called a SUPER (Systematic Utilitarian Procedure for Extremity Reconstruction) hip, knee, or ankle surgery at the age of two years old.  We were also given the option of a symes amputation which would amputate the foot and leave Oscar as an above knee amputee.  Although today's prosthetics are amazing they are also expensive and insurance only covers basic prosthetics so if Oscar wanted to play a sport or swim, a special prosthetic would need to be bought out of pocket for him.  With kids, you must change prosthetic from 9 months to 1 year especially during growth spurts, making paying thousands of dollars for a special one seemingly impossible.  Also being an above knee amputee would mean he needs a knee joint in his prosthetic, more complicated mobility wise not to mention more expensive. Surprisingly rotationplasty is not currently an option for Oscar but maybe it could be after SUPER ankle surgery.  Although not aesthetically pleasing it would give him a natural knee and he would only need a below knee prosthetic. I thought it could be a good option to avoid years of surgery but give Oscar good mobility.  Dr. Paley said with any of these options he would start the same way, with the super surgeries of his hip, knee, and ankle so we can postpone making a decision until after we see how this first surgery goes so we've decided to do that.  In the meantime we have our prescription for a prosthetic leg so we are so excited about having it made and seeing our little Oscar walk! 

Here's some of his x-ray's.  He has a super tiny femur but its there!

It's weird getting a prescription for a leg!

 

Meeting friends was the best part of the trip!

In two weeks...

...we will be leaving for Florida for our final opinion with one of the top doctors in the world for PFFD and FH.  I'm excited but nervous at the same time.  We will get to meet many other kids and adults with Oscar's condition.  Oscar is a standing pro now and wants to run around with his brothers and sister and needs a helper leg to do so.  I have visited our local prosthetic and they are excited about making a leg for Oscar.  They will make a mold of his little leg and foot when we get back.  Regardless of what Oscar's options are, he will need a prothetic to get around in the meantime.  The prothetic place here even has an amputation playgroup for the kids!  Funny though, Oscar will be the only non-amputee in the amputation playgroup. 

Once we know what our options are in Florida we will come back home and make some hard decisions about what way we want to go with Oscar's care.  Oscar's case is too complicated for our local doctor, he would not do any surgery for Oscar and would leave him in a prosthetic for the rest of his life.  This would mean at adulthood he would have his adult sized foot at knee level and would complicate having a knee joint in a prothetic.  Shriner's offered a rotationplasty which involves turning the foot around backwards and using the ankle as a knee.  It's an amazing surgery but its a hard decision to make.  This would allow him to have a below knee prosthetic which would allow easier mobility.  If lengthening is an option, he would undergo many surgeries and sacrifice parts of his childhood recovering from surgery.  Not to mention all the travel back and fourth to Florida.  We are undecided as of yet what our decision will be but we feel we owe it to Oscar to know all possible options before making this life altering decision.  Please pray for us on our journey down to Florida this June 7th.  This will be highly emotional trip for our family but I know whatever the doctor says, Oscar will be ok.  He is healthy and happy and that is what matters most.  Oscar is blessed to have so many who care about him, one of which has overwhelmed us with her and her families thoughtfulness!

Here's a picture him "helping" with the dishes.  He climbed in there himself.

Even though he doesn't need it to stand sometimes we practice standing on blocks.  He's holding the remote, he's really good at changing channels!

Ten toes are overrated!  I love his both his little feet.

Great quote for Oscar!

www.facebook.com/oscarslittleleg 

Crawling - little leg style

Oscar has his own special way of crawling. He gets into everything and goes anywhere he wants. I can honestly say I love his little leg. I couldn't imagine him any other way. I use to have dreams about his leg growing but I haven't had any in a long time. I love how his little leg fits cupped in my hand when I nurse him. If we choose to lengthen, his leg will change. It will have scars from the fixators. Part of me wants him to stay the same but I know as he grows his needs will change. In our eyes, he is perfect. This year is going by so fast and he will soon be nine months. This time last year we had just received the news that Oscar would have a little leg and we were waiting for an amino to tell us if he would be ok. We thought we might lose our rainbow baby and now, he is here and life couldn't be better!
Oscar got his first pair of shoes. The clerks at the shoe store were a little thrown off at first but reacted quite well to Oscar's unique situation. He charmed them with a perfectly timed smile and his inquisitive brown eyes.
I'm looking into some jobs I can do to bring in some extra money. We need to prepare for future costs. It's hard though, I've been out of the work force since Alex was born and with all his appointments and nursing Oscar, it's hard to find something that will work. I think the only thing that will work is babysitting some kids in our house. I will do anything to help my Oscar get what he needs but I still have to care for the needs of Alex. He is doing so much better in therapy but it is necessary for him to continue seeing all his therapists. He recently learned to tie shoes and just today learned how to open his favorite drink, pedisure. I still hope, with all these therapies, that Alex will lead an independent life one day. Here's a picture of his new shoes and a rare picture of all three kids looking at the camera at the the same time!

Oscar can crawl!!!

Not that I had any doubt he could but it is still amazing! He has been army crawling for about a month and now crawls on his left knee and his right foot. It is adorable! I have been very inspired lately by a lady on Facebook who lengthened with Dr. Paley, over 20 inches!!! - which is what Oscar would need, if lengthening is possible. I'm hopeful that it is based on some of the cases I've seen. Lengthening would mean years and years of surgery and I'm worried about how we will pay for all the expenses associated with surgery, even if we can convince our insurance to pay for the lengthening. Every time he has lengthening, I will need to stay in Florida for four or five months for appointments and daily physical therapy. I have no idea how I will manage that along with my other children, one who is autistic and require multiply weekly appointments, and the other who needs weekly speech appointments for her lisp. Currently I take care of my children's appointments while my husband works. I guess I shouldn't worry yet until after Oscar's first appointment but, in typical mommy style, I worry for children's future. Right now I will rejoice in the milestones my son is meeting despite his difference. He is so happy each time he learns something new! I can't wait until he gets his first helper leg so he can walk!