Fibular Hemimelia

Well our results from the geneticist came back.  Kinsley has what is called Fibular Hemimelia.  Fibular hemimelia is the complete or partial absence of the fibula bone.  It is a mild form thank goodness, because severe forms have lots of surgeries to fix it.  The x-ray showed that her fibula and tibia were both shorter than those in her right leg.  It also showed that her femur is shorter, which we had no clue about.  It is her 2nd toe that is missing.  There was not x-rays taken of her ankle but it seems like she might have a ball and socket joint instead of a hinge joint.  This is making it a little hard for her to walk but she is adjusting.  So for treatment the ankle could have to have a reconstruction but that all depends on how the orthopedic thinks she is doing with it.  She will have to have some sort of lift for the leg difference.  And of coarse she will have different shoe sizes.  When she is close to done growing the doctors will go into her good leg and put a staple in the growth plates so that the leg stops growing so the leg difference can even out.  That is for a difference of 2 inches or less.  If by some chance there was more of a difference (which does not look likely) she would have to have some very serious leg lengthening surgeries.  Thank you Jesus it is not supposed to be that far off.  It is a little scary thinking about them messing with the good leg.  But I guess that they can watch the growth until then to be able to tell when to stop the growth in that leg.  I am relieved that it was not the other problems the geneticist was looking at (one that can cause cancer)!  This will only affect her leg, not her health.  My heart does break for her with the problems she does have.  The poor girl already has a limp :(  But I know God will take care of her and she is so pretty and sweet and tough that she will be able to handle any teasing she receives.  It does feel good to finally know for sure what is wrong with her leg.

Kinsley the determined

Kinsley is my 10 1/2 month old daughter.  My youngest of three.  The last two weeks have been eventful for her.  She is learning to walk.  I watch her take a few steps and fall and she wants to get right up and try again.  She tries over and over all with a big grin on her face.  Her dedication amazes me.  Not the normal dedication of a baby learning to walk, but a child with a disability learning to walk.  With each step I see the difficulty she is having.  With every step my heart breaks for her.  But she keeps that smile on her face and keeps trying.  A few minutes after Kinsley was born Grant looked at me after examining his perfect daughter and told me she was missing a toe.  The nurses did not realize it, they were a little frantic after my whirlwind labor (that story will come later).  I looked at her foot and sure enough she had four toes, two of which are webbed together.  At first we thought that was it.  That the poor girl would be embarrassed of her toes and never wear flip flops.  But as she started to grow we started realizing that her her foot was much smaller in length and width, her leg was shorter, and the newest realization is that the ankle has some structural problems.  We were told that when she started walking we would see the extent of her problem.  Now she has started walking.  I sit in my house and want to laugh and cheer that she is overcoming her leg disability and walking so young, but I also want to cry every time I see how hard it is for her.  She has a hard time going straight.  A lot of side stepping and going in a circle.  Her little ankle rolls funny and gives out.  Yet she gets up with a smile and tries again.  Amazement.  I feel like if it was me I would sit on the floor and cry after the first time.  My Christian walk is the same way sometimes.  I try to live good and try to follow Gods laws, but over and over again I fall.  Sometimes I stay down for a while and wallow.  I want to be able to bounce right up with a smile and say "It's ok, I will just try harder this time".  I want to have the dedication of my baby.  I pure sincere smile.  To keep going and keep trying no matter what is thrown my way.