heather cords's blog

Hello Everyone,

We took Kalyn this last week to Shriners for her 6 month checkup. They stated that she is consitered Class A PFFD and Fibular Hemimelia in both legs. They stated that she is not a canidate for bracing. They stated that when she beginns to walk that they will give her a shoe lift becuase they are expecting approx a 4 inch leg discrepency between her left and right legs. They will be recommending leg legnthing around 7 years of age. If they do not see the results that they are looking for after awhile of legnthing they will recommend amputation from the thigh down on her left leg to give her the lift that she will need to walk.

Well I know that every parent thinks that their child is always the most beautiful and most inteligent child that there is out there but I have to say it about my little one. SHe is just starting to eat little bits of solid food recently and last night I turned my back for just a second and I could not believe that she picked up the spoon and tried feeding herself bec/ apparently I was not doing it fast enough for her. Check out her new picture.

Love,
Heather and Kalyn

Hello everyone. I wanted to let you all know the good news that my husband and I just bought our first home and have been moving in for the last 2 weeks. I think the reason that I am most excited about this home and the reason that we pushed so hard to get it (even though the mortgage will kill us) is that it has a swimming pool for Kalyn. Shriners told us how good that water therapy will be for her legs. I have put her in it a few times and she still has that 5 month old baby reaction of throwing her arms in the air but she kicks her legs everytime that she is in it. She has been moving her left leg so much more latley. She has even now been able to grab both of her feet. Her legs are too short and she cant put them in her mouth but man oh man does she sure try to. She said her 1st word 2 days ago. Momma....Wooohooo. Man that made my entire day.

I really wanted to take a moment to thank everyone that has emailed my and posted comments for my husband and I to read. I have been so over emotional this last week that I have not even been able to write anyone back and post anything. My little baby is getting bigger and bigger each day and I just cant even think of how my life would be without her. Here I am being so unhappy about her condition I sometimes....well most of the time forget how lucky we are to have her. She is God's gift to our family and instead of being so sad about what she has facing her and her life I need to remember how happy I am that her is here with us.

My first and only child Kalyn was born on 03/01/06. I was told during pregnancy that my daughter was a dwarf and or had a broken leg. It made for a very emotional pregnancy. My little girl was born and taken from me immed. and put into "Baby ICU" for 8 days. No one could figure out what was wrong with her left leg..we were sent to Shriners and within a short amount of time they diagnosed my little baby with PFFD in both legs and Fibular Hemimilia in both legs as well. She also has 4 toes on each foot (it made for an adorable birth certificate). I am writing this with tears in my eyes bec/ she is now 3 months old and the bigger that she get the more real her condition becomes to me. I just dont understand how I am suppose to teach her how to be ok with this since I dont even know how to be ok with this..I felt like my husband, myself and my family were the only ones going through this until I found this site. I am so happy to have read the letters from so many. I am so worried that she is going to have a harder life than other kids. I know that I should not say this is not fair since life isnt fair but it just isnt. No child should be born with problems..I would really like to be in contact with others that have children that have PFFD and children that have grown up with PFFD. I am having a very hard time with this. I dont think that I will have any other children bec/ I am afraid that he/she will have the same disorder that Kalyn does. She is the love of my life and I will do anything for her. She is my little angel. "God only gies special babies to special people that can care for them".