Fixable is not so easy

We did so much research on PFFD that I was just getting tired of looking at it! I read so much, there were so many decisions we had to make. Probably the easies thing to do with her leg was amputation, then there was turning her foot around and wearing a prosthetic so her foot would act like her knee, then the hardest was lengthening her leg but this would allow her to one day have both legs the same length. I knew it would be hard on her but lengthening was the way I wanted to go. I sure didn’t have all the information on lengthening a bone but in my mind it was something easy to do. Well lets just say I was wrong! All the research I was doing I kept seeing the name Dr. Paley come up, well then I started researching him and come to find out he is one of the best in the world at lengthening bone and he specializes in treating children with PFFD, event better news he was right here in Florida. So with no hesitations I called and made Kaylee an appointment. 2 months later we headed to West Palm Beach, FL to meet with Dr. Paley. That was such a turning point in my life sitting in that doctors office, it all came into prospective for me. There were kids all around us with the same and event worse conditions as Kaylee I finally understood this whole PFFD thing. It’s not something to be taking lightly for sure, there is some much involved this was very overwhelming to me. I finally seen Kaylee’s future and it was hard to coup with. They called us back to get x-rays of her leg, still till this day I cry every time they do this she hates it and I am always so scared of what all these x-rays are doing to her, my biggest fear is what if one day she can’t have children of her own b/c of all these x-rays. You never know, but I just have to put my trust in these doctors I just hope they know what is best. After a few hours of waiting for the doctor they finally called us back, he said she would need at least 3 lengthening when she is 4 years old, then 6 years old, then 12 years old and she would also need the super hip and knee surgery when she turns 2 years old. I was thinking “Ok this is easy right?” No, not easy at all here are the details, when she is 2 they will give her a hip and a knee then she will need to stay in a lower body cast for 6 weeks, along time for a 2 year old! Then the lengthening comes, they are pretty bad, she will have this thing called a fixatetor on her leg for 8 months at a time which 4 of these months we have to stay in West Palm Beach. A fixatetor is a thing that has all these pins going into her leg and everyday you have to adjusted them so that the bone in her leg will stretch. Very painful for her, lots of physical therapy, and it seems almost like she can’t move for 8 months. As you can tell I am not thrilled about this but in my mind this is the only way, and although this is going to be so hard on her and all of us, it has to be done! I just have to thank the Lord that Kaylee is being seen by the best, we are so thankful that this is event an options for her and I always say I am so thankful that we are just trying to save her leg and not her life! Thank you Lord for all of our blessings!

Our New Life

A few days later and they released us from the hospital. I decided to breastfeed Kaylee, that was such a good way for me to bond with her, it really helped us both to connect. We finally made it home, when I went into the hospital it was cold and everything was dead, but when we made it home spring was springing. Everything was so beautiful and beaming with life, the grass was green, the trees had leaves, the flowers were blooming, and the air was fresh. What a nice way to come home!

I know people are not going to like what I am about to say but this is something I have to get out so you all can know my true feelings. I am not going to lie I was so overwhelmed! For the past two weeks I was being pampered in the hospital, no responsibility but myself. Then all of the sudden bam it hit me like a ton of bricks, not only did I have my 18 month old son to take care of I had a newborn who needed me every minute. Something I was not thinking of while I was pregnant. In the beginning I did have a lot of help thanks to my mom and Chad’s mom. But my son had been away from me for so long that when I made it home he didn’t want anything to do with me, he didn’t want to be at our house at all. That on top of everything else that really made my post-partum worse. I just couldn’t shake this feeling I had, I thought to myself women all over the world was taking care of two or more children why couldn’t I do it. I know this sounds crazy but the only way I made it though all of this was watching 19 kids and counting, that mother was such an inspiration to me.  I would just cry all the time, I didn’t want anyone to come around I almost felt like I just wanted to hide. At the time I just felt like no would see Kaylee like I did, all they would see was her leg and not the precious baby she was. I know that sounds terrible these were my feelings. Deep down I knew that was not true but that was just my hormones getting the best of me .

After a few weeks things got a lot better we all got into a routine, the breastfeeding was going good and my post-partum finally subsided. After that I wanted to show my new baby off, I wanted everyone to see her! She was beautiful! Kenny started to get use to her to. Things were going great and my life was finally perfect again! I had two beautiful, healthy children! Going though this experience has really made me appreciate all the good Lord as blessed me with. I have a new found respect for family’s and children w/ similar situations and my heart and prayers go out to all of the children in this world with much worse situations. I am very lucky because first hand I know it could have been so much worse. Please Lord take care of the children in this world that need you the most!

My life had never been Brighter

Ok so back to the doctor scare. They admitted me into the hospital, my doctor wanted to keep me pregnant as long as possible so they kept me there. They hooked me up to an IV with fluids to keep me hydrated. I stayed there for almost 2 weeks, then finally the doctor came in and said lets get that baby out! I was scheduled a few days later for a c-section, oh I could not sleep those few days I was so excited. Finally the day had come Friday April 2^nd, 2010! There was so much going on in my mind that day, I would think what if there is a lot wrong with my baby, what if she does have down syndrome, what if she is missing her foot, what if there is hardly a leg there, but what if these doctors are just crazy and my baby is perfect. They never gave me a clear answer to what it is, they could have been wrong the whole time. That was my hopes! It was 1:00 that afternoon ready for surgery. My family came in and said there goodbyes, but when it came to my son saying good bye I just broke out in tears. No more just Kenny being my baby there would be a new baby here. How in the world would he handle all of this, will he understand what’s going on and why I can’t hold him all the time like I use to. Everyone walked out and I got ready to walk back to the surgery room. I was shaking, I just wanted to turn around and run. Was I ready for this? No I needed a little more time to think. There was no turning back now it was time! I was shaking so bad they couldn’t even put the spinal tap in my back the nurses had to hold me down. They got it in finally, laid me down and put the sheet up so all I could see was blue. I don’t really know what I was think here maybe it was all the pain killers. I just know I wasn’t event thinking about her leg all I want to do was see my little girl. They brought my husband in and then I started felling them do the surgery. A few tugs later I heard it’s a girl. Then next the cry, other then my son the sweetest most precious thing ever. I couldn’t hold back again I cried with tears joy! All my husband could say was she is perfect, she is beautiful! I remember asking him does she have hair, that’s all I cared about. I got one quick look at her then they rushed her off to the nursery, I didn’t even see her leg. About an hour had past they got me back in my room, then they brought her in. My little baby girl all my worries were gone. She was the most beautiful tiny little angel I had ever seen. I knew it these doctors are crazy they just wanted me to worry I guess. She was perfect from what I could see and that’s all that mattered. She was so precious all rapped up in that swaddle blanket. I waited awhile before I looked at her leg I just wanted to enjoy this moment with her, I think I was scared to look. But after a few hours I looked. What was this all I was worried about you could hardly tell a difference! I knew it she was perfect one leg was just a little short but not by much. There was an orthopedic Doctor there at the hospital that day he looked Kaylee over and said I have never seen this nor heard of this, let me go do some research he came back in and said I believe this is something called PFFD. I was so relieved, they had a name for it and that was the only thing wrong with her nothing else. No down syndrome no missing foot and she had enough leg to work with.  It was FIXABLE!!!                                                                                         

 

The Dark Side

Ok I am sure you are sick of hearing how perfect my life is, I sure am. It was a few weeks before Christmas of ‘09 and my 20 week ultrasound was here. I dropped Kenny off w/ my mom, I wanted to go by myself because I had some much needed Christmas shopping to do after my doctors appointment. I got to the Doctors office they called me back to the ultrasound room, I remember doing this w/ my first no worries at all they was just going to see if everything was in it’s right place. I seen her on my 16 week gender scan and she looked perfect so I didn’t think much of it. The ultrasound girl was doing her thing we was talking about Christmas coming up and how we weren’t

prepared for it. I was just think about all I had to buy for and what I was going to get them. We talked for awhile then she got really quiet but I didn’t think much of it. Soon she said go back to the waiting area the Doctor will be with you soon. So I waited for a little while then they finally called me back. I got in the room and waited little bit longer then finally she came in. I will never forget her face she looked kind of scared. She said I was looking at the ultrasound and there seems to be a problem. I was thinking.. Ok what in the world does that mean! She said I am just going to tell you I have only heard of this in down syndrome babies. My thoughts “What did you say? I don’t understand those words!” She went on to say this is nothing I have ever seen and I have no idea what to tell you, I know she seen the tears whelming up in my eyes, she said I will give you a minute to think about this and she walked out of the room. Those few minutes felt like a lifetime! I sat there all by myself in that room and my life was crumbling down all around me. Tears running down my face I just couldn’t hold it back I cried like a baby. A million thoughts running though my head but all I can remember is think this isn’t happening the ultrasound is wrong! Just talking about it, I am getting that feeling again you know that feeling were your heart feels like it’s coming up your throat. I was just sitting there shaking in shock. The Doctor walked back in and said I am sending you to a specialist (200 miles away). I said ok that’s all I could get out. She told me take my time in here and leave when I was ready, so I sat there a little longer and tried to pull myself together. I didn’t want anyone to see me crying when I walked out. I got in my car and it’s funny to think now I was so dramatic! I was just looking at the sky saying WHY, why my little girl, why can’t it be me and not her, what did I do wrong I have done everything I was suppose to do and I have been a good person all my life, why Lord are you punishing me. Little did I know this was no punishment but a honor from God for choosing me out of everyone in this world to be her mother and take care of her. A few days pasted probably the worse few days of my life! Then the appointment with the specialist came. Chad’s mom Rhonda watched Kenny, and me, Chad, my mom, and dad went together. All that way up there and they said this is something we have never seen or heard of all we can do is do the amniocentesis test on you, but there is a chance you can lose the baby. Um no I don’t want that I will hold off, thank you. There was nothing else they could tell me we left and all I could think was how am I going to fix this. I hate milk and any dairy products maybe that was the problem, maybe if I forced my self to drink and eat dairy products her leg will grow. I remember on the way back home we stopped at Dairy Queen and I forced myself to eat some ice-cream , I just wanted to throw up w/ every bite but I finished it. Lots of calcium for me now! All I could do was pray, please Lord just let it be her leg and nothing else, a leg I could handle but anything else I wasn’t prepared for. I thought the odds of it just being her leg were slim, there was just never one thing wrong. We all researched it a lot and found a lot on kids with something called PFFD, but no one was for sure what it was so we really didn’t have any answers. Well the months pasted pretty quickly I just remember I didn't want to talk to anyone or see anyone, I didn't want anyone to ask me questions about it. Before I knew it I was going to my 36 week check-up. The doctor came in with some more bad news. She said my amniotic fluid seems to be leaking we might have to take the baby early. She said I want to keep you pregnant for as long as possible so go home drink lots of fluids and stay on bed rest for the rest of your pregnancy. But with a 17 month old boy to take care of the was impossible. The next day I took it pretty easy but I noticed Kaylee hasn’t moved at all today. I was scared what if something happened, what if my child had been taken away from me. That was far more worse then anything wrong with her leg. I called the doctor’s office they said get here fast. We flew up there they checked me right away, my fluid was extremely low, the Doctor said I am admitting you to the hospital. I was scared to death, but all I could think about was my little boy that was the last day I got to spend with him by ourselves. Both of our lives were about to change forever!

From the beginning

I got married to my wonderful husband when I 20 years old, I knew he was the one and only for me. He was the strong one, the one who always kept me straight and put me on the right path. I knew when we dated he would be something in life he was so driven, I knew then he would take care of me and our children. We had the most beautiful wedding thanks to the best mom in the world my mom! After we had gotten married we decided to build our dream home. Then soon after we moved in I was getting baby fever, it took a few months for me to get pregnant but it happened. We were so excited finally a family to fill these rooms up. We soon found out it was a boy the best news ever. My pregnancy went very good I was one of those women who was scared all the time I ate like I was suppose to I would drink only water or sprite and I would only take a Tylenol only if I had to which was hardly never. The day finally came it was time to have our baby boy. The happiest day of my life! After being in labor all day my doctor came in and said we need to do a c-section, defiantly not in my plans but what ever I needed to do to get him here safely.  Oh just hearing his first cry brings tears to my eyes, I still remember it like it was yesterday. The first time I looked at him he was the most perfect gorgeous baby boy in the world! I will never forget that feeling of joy, I had a new little man in my life Kenny Dell Barton. From that moment on my life had changed I was a mother now, he was all my responsibility. He was everything and more that I hoped he would be, he had lots of dark hair and big blue eyes and he was perfect in everyway possible. After the shock and be completely overwhelmed by taking care of a baby passed, I actually could not believe my life had turned out so perfect. When my little boy started getting a little independence to him I told my husband I am ready for another one and this one will be a girl! Kenny needed him a playmate, so when he turned 9 months old we found out we were pregnant again. I did the same thing I did w/ my first one I followed every rule possible "what not to do when you are pregnant". Everything was going great w/ this pregnancy as well. The 16 week gender test was coming up and man I was so anxious, I just knew this one was a girl. My mom went w/ me that day and right when we went in there the ultrasound tech put the thing on my stomach and in a few minutes said it's a girl! I was so excited. When we got back in the car I will never forget telling my mom, man I get everything I want, the Lord must be listening to me, I sure have a good life!  But soon all that was about to change my 20 week ultrasound was just around the corner. 

Before it all

First of all my name is Ashley, right now I am 25 years old and have a wonderful husband and two beautiful, health children.  From me saying that you would think things in my life are about as perfect as one could hope.  I will start my story by saying I have always been one to get everything I want, need least to say I have been spoiled all my life, thanks to my parents, my husband, and the lord for giving me the life I have lived.  I have had plans for my life ever since I was a little girl.  Ok here were my plans, I wanted to get married to prince charming, live in a beautiful castle, and have two children, I wanted a boy first then a girl, I guess because I always wanted an older bother.  But oh as I got older I soon found out everything does not go as planned and sometimes you are put to the test.  Well here we go my test in life.

Introduction

I am writing a blog for my little girl.  Kaylee Diann Barton was born with a rare condition called Proximal Femoral Focal Deficiency in other words PFFD.  This is a condition that has effected Kaylee's right femur bone, hip and knee.  I feel very compelled to write this blog to give everyone around me a better understanding of this condition, and our feelings as we all embark on this journey of Kaylee conquering PFFD and someday walking with both feet on the ground!