Kaylin's 2nd Shriners Appointment

Our baby girl is 6 months old. Today she had her 2nd appointment with Shriners. It started as a very nervous and scaring day. And ended into a very relaxing, and heart warming day. My husband and I decided on amputation for her right leg. Doctors seem to agree that this is the best and hardest choice we will ever have to make in our life. We sheduled her surgery, and sheduled a follow up checkup right before her surgery to evaluate one more time. Her left leg, we are going to leave untouch for the moment. In her left leg she has her entire fibula bone!! It is just malformed.. which could cause her problems later on, but it is too early to tell.

The best part of our day today was we got to meet other families that have already been through this journey. First we met a young 10 yr old girl, who has her right leg amputated. She was telling us all the different sports she plays.. basketball (her favorite :)  ), soccer, softball, etc. She had so much personality for a 10 yr old. She told us how she loves her leg, especially when wrestling with her dad, she uses it to her advantage :)...  Secondly, we met a young lady with a prostheic, who is closer to our age.  This young lady is one of the most strong, caring, greatful, independant people I've ever met. She had more confidence in herself than I have in myself. I hope Kaylin will have just as much determination as her. Her and her mother were extremely helpful and answered all my questions, and reassured all my doubts. And did you know there is a prothesic leg were you can wear high heels?? yup, thats right, my baby girl will get to strut in those high heels one day :) This met and greet, was by far the best. Her and her family had so much personality, that I felt comfortable to ask anything.

Kaylin Rose is 5 months old!! She is growing to fast for us. She loves playing with rattles, smiling, babbling, and loves to be tickled :) Her favorite movie is "Happy Feet!"   She will sit and watch the whole movie, and laughs most of the time during the movie. Tonight we watched "The Lorax" together, and she loved it just as much.. So I think we are going to ask Santa for it. :) This weekend my husband and I both taken off from work, and we went pumpkin picking, carved & painted pumpkins, and had a pizza and movie night. So far it has been a very relaxing weekend for us. 

Kaylin's next Shriners appointment is in a couple weeks. We will get to see how much her little legs have developed since she was 8 weeks old! We will also get to meet two families with children older that also have Fibular Hemimelia. I'm very excited, but also nervous. I'm so ready to learn and see what the outcome could be for my sweet Kaylin.

4 months old

Kaylin is almost 4 months old. She is growing so fast. She is doing very well. Always laughing, smiling, and talking. We are so blessed to have her in our lives. I thank God for her everyday. I also would like to thank everyone else that has been here supporting us. Wether you are following this blog, asking how she is doing, or sharing familiar stories. It all means so much to us. I used to break down from time to time. But that doesn't happen anymore. And it really is because of all the supporters we have! So thank-you, each and everyone of you.

I know God created her this way for a reason. He knew what he was doing. God gave her a amazing brother, he amazes me how much love he has for her already. I hope he will always be her protector. Kaylin got accepted into Shriners, one of the best children's hospital. Everything is just falling right into place, the way it should. Kaylin has already changed us in so many ways already. Little things that you didn't appreciate before, you do now. I notice myself being more carefree, and not worrying about what negative people say or think. She is so special, and beautiful.
Ever since Kaylin was born.. I have wrote her a letter every month for her baby book. I want her to know everything in this journey.



                                                                   Kaylin-- 4 months

3 months old!

                                                              Kaylin-- 3 months old!

Kaylin is now 3 months old! Time seems to be slipping away to fast. It's feels just like yesterday I was in tons of pain having her. She is a very happy baby. Always smiling, cooing, and laughing. She has so much personality already. While we do have our challanges ahead of us, I do believe with God by her side she will have enough will-power to get through this. Her next Shriners appointment is in Nov, then we will shedule her surgery. My husband and I have decided amputation for her right leg is the best option for us, and Kaylin. We want her to have the ability to accomplish anything she wants to in life. And amputation for a prothestic leg, will give her the mobility to do so. While we are happy with our decision it still weighs heavy on our hearts. I know Kaylin will understand. In the meantime I have been documenting everything for her.

2 Months Old!

My sweet baby girl is two months old today. She has been completeing every milestone, just as every other baby. She smiles all the time when I talk to her, She is cooing all the time, and starting to hold her head up. What a wonderful personalilty she has already. Yesterday, I woke up and looked over at her in her bassinet, and she just gave me the biggest smile. It was almost like she was watching me sleep and waiting for me to wake up. It was the cutest thing ever, what a wonderful way to start my day. As opposed to my son waking me up by poking me in my side, saying "wake up, wake up!" I love being a mother, I feel so blessed for everything I have in life. I know I say this all the time in this blog, but Kaylin's situation is a gift. She is so special already, and I hope she will realize what a blessing she is to everyones life. I have no doubt that she will be able to accomplish anything she wants to in life. I think sometimes people forget how fragile life really is, until it is taken from you. We are not in control, even though sometimes it may feel like we are. God only knows what is in store for you, and what blessings are to come. The day I found out about Kaylin, really changed my way of thinking. I'm going to do whats best for my family in every situation, if you don't like it, too bad.  Life is way too short to have negative people in your life. Words can hurt, but only if you let it. Don't let anyone bring you down, stand up for what is important to you, and the rest will fall into place as it should, as God intended. <3

Kaylin's First Shriners Appointment

Kaylin had her first Shriners doctor appointment today. I must say I was very impressed. I'm so pleased with our decision to go to Shriners instead of Vandy. The women who escorted us to our room, was very friendly.. They were all very nice there and helpful. This by far was the most information we recieved about Kaylin's little legs. They keep you very involved with everything. We got to help them take X-rays of Kaylin's legs, that was cool. They have a coordnatior for every step you go through. I loved how I was constantly asked.. "do you have any questions?" And boy did I! Anyways when talking with the doctor he told us our options for both legs, and gave us a OFFICAL diagnosis! She was diagnosised with Fibular Hemimelia in both legs. He told us this is a very common limb deficiency. Treatment for her right leg- amputation is higly recommended because she has the most severe case of Fibular Hemimelia. She is missing the entire fibular bone, her tiba is severly bowed, and she is missing lots of foot bones, that give her a nonfunicationable foot. When he told me this it just made it feel more real, hearing the word "amputation". For her left leg-- NO TREATMENT!! very excitied about this! She appears to have a very stable ankle so far.. He did say that it is alittle early to tell if she may need a brace at first to help her walk. But so far looks very promising. I asked him about her left leg.. cause I noticed that it does turn inward alot, he doesn't think it is any big deal, that she will most likely grow out of it.. Anyways overall it was a very successful visit! Also they want us to take her to a localy to get a ultrasound of her kidneys and bladder done.. Apparently children with limb deficiency may also have problems with their kidneys or bladder. Our next visit will be when she is 6 months. And we will get to meet with 2 different families that have children with the same condition. I'm very excited to meet them! Anyways time to get ready to go on vacation! Our family total needs this right now! Love and God Bless Everyone!

Check this out..

This is so neat... special needs dolls...

Our Shriners appointment is drawing near now. We have been very busy this month. Had all kinds of family come in town to meet baby Kaylin. It was good seeing everyone. We are so blessed to have so many supportive family and friends.  Now it's time to get ready for our first visit to Shriners. I'm hoping we will learn alot from this first visit. I will post a quick update on our visit, before we go on vacation!

Here are some interesting speeches I found of Amiee Mullins, she has the same condition as Kaylin :)I definetly will be sharing these with Kaylin, once she is older.

http://www.youtube.com/watch?v=dTwXeZ4GkzI

http://www.youtube.com/watch?v=JQ0iMulicgg&feature=relmfu

                                                                  Kaylin --7 weeks :)

Big brother loves his sissy.

Everyday Collin loves his sister more and more. I was worried he would show alot of jealously towards her, because of all the attention she would be getting. But I must say.. I was totally WRONG! He showed some signs of jealously at the begining, but seems to be gone for now... He is very protective of her, which I must say I love it! He thinks she is HIS baby instead of OUR baby.  He also loves to play with her now. He constantly rubs his nose against hers, and laughs at her everytime she makes a funny face.. not sure where he learned that lol. :) And today they were playing under the covers. He kept talking to her under the covers.. and when I would peek my head in, he would tell me to get out.. It was so cute! Here are a few pics I was able to get while he was playing with her :)

So Happy!!

Look.. they are already plotting against me!

Love it!

One month old!

Kaylin is one month old today! Man how time flies by so fast. Seems like just yesterday I found out I was pregnant with her. Kaylin is a very happy content baby. I love having her in our lives.

Kaylin has her 1st doctors appointment at Shriners this month. I'm very excited, anxious, and nervous all at the same time. I'm so excited to finally get answers about her condition, and find out what kind of treatment is available for her little legs.

My husband and I are very prepared for this visit. Ever since we found out at our 20 week ultrasound about her condition I have never stopped searching for answers. Worst case senario for her right leg- amputation. I'm concerned about her left leg, as she is growing I notice her leg does turn in quite abit. I'm praying they will be able to save her left leg, maybe just minor surgery.

It's easy to talk about it now, after many tears, and researching the outcome. But my heart still aches, somedays. My heart hurts for her, it's too hard not to think about what challanges she is going to have to face. I rather it be me. Somedays I think.. "why us?" and then other days I think.. "why not us?" What better parents are there. We are a very loving, caring, responsible parents. God would have never brought this upon us, if we couldn't handle it. I truly believe this situation is a blessing in disguse.

When I was alittle girl, I would pray to my Lord everynight. But eventually I let my life get in the way of what is most important, my Lord. Ever since I found out about my baby, all I do is pray now. I talk to God everyday, and thank him for this blessing and ask for forgiveness. For anyone who has had something tramatic happen in your life, you know what I'm talking about. You start looking at your life, and making changes for the better.

Anyways, I will keep everyone updated. Hopefully I will find time to post something after her doctor appointment! But no promises, We plan on leaving town for a couple days! So ready for a mini- vacation! Here are some pics of Kaylin taken- one month old!!!

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Kaylin got accepted into Shriners! Yesterday I got a call from the Chief of Staff at Shriners, telling me she has been accepted for treatment at their hospital!! This is very exciting for us. Our appointment is in June, and they will be doing a full diagnostic on her, and discuss what our options are for treatment for her little legs. This is only the first step of many into our ever changing life.

I look at Kaylin, and she is such a beautiful, happy, content, bundle of joy. But sometimes when I look at her.. I think to myself, she has no idea whats to come. Lord, Only you have all the answers, please give our sweet baby the strength and courage to make it through.

Glad to be home..

I'm so glad to finally be home from the hospital. We have been home for about a week now. We are all trying to adjust to this new life. Trying to find time for both our babies, household duties, 2 dogs, and 4 ducks. lol. It has been great so far. Not as stressful as everyone was telling me it would be. Although I am off work. It will be more challanging for us, once I go back to working 7 days a week again.

Collin thus far has done pretty good with his new baby sister. At first, he acted like she wasn't even here, and just went on about his business. But lately he has been paying more attention to her. He loves rubbing her head,"pretending" to give her kisses, giving her a binky, feeding her. He also has been showing some signs of jealously... wanting to always sit on mommy when Kaylin is, and the other day I gave Kaylin a bath, and Collin was extremely upset that he couldn't fit in her tub! Overall he is doing great with Kaylin! I couldn't be happier.  

The journey offically begins..

After only 5 hours of labor, Kaylin is finally here. She is so beautiful. Even though we have been given this challange in life, I feel so blessed to have her here with us. We knew from ultrasound that Kaylin's right leg is affected with FH, but to our surprise, both legs are affected. Xrays were taken at the hospital.. She has missing fibula, bowed tiba, missing toes/foot bones in her right leg. And she has missing toes/foot bones, bowed tiba/fibula in her left leg.                                   

To my beautiful daughter-
I remember when we first found out we were pregnant with you! And now you are finally here with us. You are so beautiful in so many ways. Just the way God created you. I'm very proud to be your mother and can't wait to start this new journey with you. Mommy and Daddy will always be here for you. I Love You baby girl.

Waiting, waiting, waiting....

My due date is finally 3 weeks away! I'm very anxious and excited, but also nervous too. I can't wait to meet her and finally get to hold her. My husband and I will finally get more answers about her condition once she is here with us. Finally 4 months of waiting is almost over!!!

In the meantime while waiting.. I have been practicing with Collin (her big brother), with a babydoll. So far so good. We feed the baby together, rock her, change her... He also knows when the baby is crying he is to be quiet. He was so cute with the babydoll... everytime the baby cries, he says "shhhh" very softly. I think at first it will be a big change for him, since he gets all my attention now. But he will adjust just fine. It is just going to take sometime.

1st news about our baby girl cont.....

After our results from our 1st ultrasound our doctor scheduled a level 2 ultrasound with a specialist that could better determind what was all wrong with our baby. The earliest appointment I could get was 2 weeks later because of the Christmas Holiday... The worst part was, I had to wait after Christmas before I could get more answers..

It was a rough 2 weeks, I cried everyday. I found myself constantly on Google, trying to learn more about her condition. I found this support group on Facebook, called "Fibular hemimelia and Amputation Awareness." It was the most helpful for me. I got to talk to other parents that are going through, what I will be going through in the future. I seen lots of videos and pictures of their children. Just seeing their smiling faces, and how happy they are now, gave me hope. These kids are absoutley amazing, running, climbing, jumping, skiing, skating, etc. Nothing seems to slow them down. I then had a different outlook on the situation. But was still hopeful that at my next ultrasound I would get some good news.

It was finally time for my 2nd ultrasound. We found out that her left leg appears to be normal. But her right leg has a missing fibula bone, severly bowed tiba, and her foot is not fully formed. Other than that, she is one healthy baby so far!

1st news about our baby girl...

It was time for our 20 weeks ultrasound. My husband and I were very excited. Is it a boy? or girl? I was for sure it was a girl, because the pregnancy thus far had been relatively easy. As opposed to my first pregnancy (a boy) was extremely difficult for me. I had morning sickness all the time with him.

As we sat in the waiting room for our ultrasound, I felt like something may have been wrong. Something just didn't feel right to me. Then I told myself.. I'm worrying for nothing, there is nothing wrong. I seem to worry about everything. I'm a big worry wort!

Finally after 30 mins in the waiting room it was finally our turn. The tech begin looking at our baby. She showed us the head, her heart, her hands...etc... then she finished the rest of the measurements that she needed before determining the sex of the baby.

After about 10 mins, she finally told us we are having a girl!! It was very exciting considering we already have a 2 yr old boy. She then began looking at the babys face, and printing pics for us. She asked me to roll on my side, so she could get a picture of her feet for us. As she began looking at her feet... she got quiet, I could tell on the expression on her face, that she was puzzled about something. She told me that she couldn't get a good picture of her feet for me. Overall the ultrasound took only 25 mins.

Then they sat us back in the waiting room to wait for the results from my doctor. I began worrying again. What did she mean she couldn't get a picture of her feet?

When we finally got in to talk to our doctor. He started right away reading the results. "Over all everything looked ok... her heart, brain, spine, arms, all of those seem to be developing normally.." I sat there waiting to hear the word "BUT" ...then I heard it. "BUT, there is something wrong with her right leg and foot" He began showing us the ultra images, and presented to us that she is missing the fibula bone in her right leg. He then began to tell me, he didn't think it was anything to worry about. I knew he was just saying that to keep us calm. He told us he was going to send us to a level 2 ultrasound, because in all his practice he has never seen this before.

After leaving the doctors, I pulled out my phone and began searching the web for "missing fibula bone". I found out there was this condition called fibular hemimelia, that some babies were born with. Most of the cases resulted in amputation of the leg for a prothesis.

The ride home was quiet, My husband and I hardly spoke. We were both in shock. As soon as I got home, I walked thru the door, and broke down. I cried, and cried. My husband held me, and told me everything was going to be okay and whatever it was, it wasn't my fault. There are really no words to describe how I felt that day. Why us? One thing I knew for sure was I wasn't in this alone. I have a very supportive husband, who is always there.