Updates, and Rambling..

Hello to all friends and family! I haven't updated the blog in a long time. We have gone through some personal battles in the last year, and gradually coming out on top! The kids and I are currently living in Pensacola Florida where I am from.

September of 2010 Caleb had his first seizure, with another one following in October. (Yes, it has been a long time since I have updated) Our pediatrician sent us to Savannah GA, to run more in depth tests, and to see the Nuerologist. We did an over-night sleep study and found out that Caleb has a lot of seizure activity while he sleeps. No other troubling causes were found. Caleb is not taking any daily medication, due to the devastating effects it has on young kids such as Caleb. On the other hand we do have medication to stop the seizures lasting more than 45 seconds. If seizures last more than a minute, the brain suffers in many ways. And today...Caleb goes to school with no problems with his hands, and his other minor deformities. He plays well with the other children, and he is a favorite with all the teachers! I can't believe he will be three in Feb.! Where does the time go?

Madison and Cameron are doing really well. Madison is in 6th grade, making A and B honor roll. She plays Soccer for the Texans (an elite soccer club here in Pensacola). Cameron is in kindergarten, where he is giving the teachers a run for their money. He makes all S's, which means satisfactory. He has a hard time concentrating and following directions. We are working on this....everyday.

Just a little reminder of why this blog exists...
The Caleb's Story Foundation is a blog following the life of a little boy who has gone through medical hurdles. I wanted to raise awareness of the deformities in birth like syndactyly. But there are so many more! Cleft pallets..etc. No matter the deformity, these children are still so beautiful! My photography buisness will take beautiful pictures of your child and family at no charge. I also work with Operation Smile, who performs surgery on children in third world countries, with the cost of pennies. The Caleb Foundation has raised more than $500 that has paid for two children to have facial reconstructive surgery. I couldn't be more proud. Thank you for taking the time to look at our blog! There is merchandise at the bottom of this blog, please take a look! 20% of the proceeds go to Operation Smile and their wonderful organization. God bless..

The meaning of "Caleb"

In the Old Testament, the biblical Caleb was Joshua's companion. The both of them eventually led the Israelites into the Promised Land, after Moses' death. An Old Testament name brought to America with the Puritans, where it was fairly common until around the 1920s.

Also means "dog" or "courageous".

I could not be happier with Caleb's name, and the meaning. As said earlier, Caleb was Joshua's companion in an amazing journey. And I could not help myself and reflect on the journey that this family has taken with him and all of his medical triumphs. And as for the "dog", go ahead and laugh about it, but if you remember the meaning "a dog is man's best friend". Caleb and his other brother and sister, are my best friends. And "courageous", that little boy has enough courage as a grown man. I could not be more proud of Caleb, and his name. Just a little reflection of my thoughts today, enjoy.

Caleb's Story Photography/Foundation

My journey with Caleb has been an amazing one. As our journey continues, I not only want to help my son, I want to help others as well. I am very fortunate that my son has had syndactyly, which can be fixed, and also a cranial deformity that also can be fixed. I am very blessed. There are others who are not as fortunate. This saddens me. I wrote this blog to tell a story, a happy one. And to let it be known, that there are kids all over the world with a deformity of some kind. The military has been able to cover the expenses on all of Caleb's medical care. There are some families that cannot pay for certain doctors and surgeries. This is where I want to step in, and I hope you step in as well. I am gathering people together in my community to help fundraiser for these kids and families that cannot afford medical care. I will also be selling tee-shirts and other nick knacks. I will picture the design below. 20% of the proceeds on all items with go directly to a charity called Operation Smile. You can also visit their site at www.operationsmile.com.  I bought a shirt for Caleb and me yesterday! If you do not want to buy a tee, then go to the site and donate what you can. Every little bit helps!
I am also donating a certain talent of mine for these beautiful children. I am giving free photography sessions for the children and their families. God made each one of us different, and I believe we should all embrace our differences.  I have ALWAYS loved the pictures that I took of Caleb's hands before surgery. Caleb’s hands were so beautiful in those pictures.  Spread the word for me please! And please spread the BLOG! Thanks again for taking time out of your day to read. May god bless you.

Helmets Can Be Cute!

Caleb grew, and he grew and he grew and he grew! And at one and a half years old, I can hardly keep up! This little toddler keeps me on my toes, and is ready to turn the big 2!

As of now, Caleb is all done with the hand surgeries.  We have noticed that he lacks some feeling in his palms. Hopefully he will grow out of this. And if not I am sure there is a procedure that can help get some feeling back. He can't feel heat with his palms, so I have taught him to feel heat with the back of his hands. If he were to put his palms on a stove burner, he would not feel 95% of it. This scares me.

When Caleb was around eight months old, we began noticing his head shape, and how it would not stop growing. The shape of his head was not normal at all. I would tell his pediatrician about my findings, and she said that he would grow out of it. The picture above and on the right is exactly what Caleb's head looks like. Caleb has not grown out of it. At eighteen months of age, Caleb started having seizures. Thats when I began to pressure the doctors further into his condition. I have blogged earlier about syndactyly and syndromes and conditions that are linked to it. Well, cranial-deformity is one of them, and the most common. Sometimes I feel like I am doing more work than the doctors are! I finally got the help I needed, and was reffered to a neurosurgeon!  I am still is the refferal stage, so I have not seen the specialist yet. The military motto is "wait...and wait some more!". Everything in the military is a lengthy process. But I can't complain, because the bills are all taken care of for us. What a blessing.  Caleb could have one of two things as of now, Craniosyntesis, or Positional Head Deformity. These deformities are are fixed by a special forming helmet, or if the deformity is severe, surgery.  What ever obstacle is next, we are in the preperation stage. We have done the research, and know what to expect. If Caleb has to wear a helmet, O'well! And if its surgery, we will pray and kiss all of his scars, and thank God he still with us!  I will be blogging again about his neurology appointment! Stay tuned, and thank you for reading!

Another Deformity?

(After first sugery)

When Caleb was about two weeks old, I began doing some research on the syndactyly thing. I found some useful sites. I also found some sites that scared me to death. I found out when a child has syndactyly there is usually something else... What did this mean? What else could my baby have? There are other types of syndromes linked to syndactyly. I asked myself many questions, as well the doctors. The doctors kept on telling me everything was ok. I believed them. But for some reason I always knew that syndactyly wasn’t the only thing my baby had. I blocked my horrible thoughts not knowing one day they will resurface and might possibly be true.  Caleb was healthy enough for his first surgery, at the ripe ole age of three months. The doctors had separated his pinky fingers from his ring fingers. They had to separate bones in order to make him full fingers. When Caleb was six months old he had his second surgery. They separated both middle fingers from the ring fingers. He recoverd from both surgries with ease. He was a trooper. His fingers healed and he was using them like a normal baby! He moved each finger separately and the bows in his fingers began to correct them self. I had a normal baby with normal fingers. Wow. Some women get post partum depression after their babies are born. I never did. I am grateful for that.  But, I was pretty depressed after the finger surgeries on Caleb. I missed his tiny fingers that were webbed together; we used to joke that if we were to keep Caleb’s fingers webbed, that he would make a great swimmer! Michael Phelps watch out!  Instead of having post-partum depression, I believed I had post-webbing depression. I really missed his webbed fingers. Those fingers were Caleb's. And I loved them.

What is Syndactyly?

After Caleb was born, I held him for a brief moment, and then he was rushed to be evaluated after a rough delivery.  He was evaluated right next to my bed, by the pediatrician. When I was holding him, I didn’t have time to check and see if all fingers and toes were there. I assumed he had all of them, besides my other children were born with all of them! The pediatrician was checking to see if any of Caleb's bones were broken or fractured after the scary delivery. "No broken bones or fractures that I can see. This big guy is pretty lucky. Well look at this! His fingers are webbed!" said the pediatrician. That’s when I felt sick. My baby is not perfect?! My husband walked over to the bassinet where little Caleb was being cleaned off. And there again was the face that I never wanted to see again! I knew that just from his expression that the doctor was downplaying the "webbing". I finally got a good look at my son’s hands and fingers. I cried, and cried, and did some more crying. The next day I was starting to feel better about my sons "webbing''. I was still kind of scared to tell family and friends about his condition, and afraid of what they may say. I finally got the courage up to take a couple for pictures and show my parents Caleb's fingers. When Caleb was two days old, I began to accept it. I was proud of his fingers and I began to love them. I had wanted a perfect child, and I knew I had had one. He was mine, and he was perfect! I thanked God that he came out living and breathing. I also told God, that I was sorry for being so selfish. I took Him for granted, by expecting a perfect baby with all ten fingers and toes.  Caleb and God helped me realize that I did have the perfect baby! I loved Caleb for who he was, and I know that God did to. I was finally at peace. The doctors wanted some x-rays on Caleb's hands, and our pediatrician had already referred us to a hand specialist in Charleston, South Carolina. We all were on the ball about his fingers, and were ready to bring a little normalcy to his fingers as well... The earlier we get his fingers fixed, the better.  His pinky was starting to pull his ring finger and his middle finger, causing them to bow. This was happening on both hands.  We got the x-rays back and were also told that some of the bones in his fingers were fused to other bones.  Not good news. This meant Caleb was going to have a more painful surgery. This was also going to be more difficult for the plastic surgeon. We would do whatever it took for Caleb and his fingers. We finally have a name for his condition to, Syndactyly.  Syndactyly means “webbing of the fingers”.

Our Caleb Is Here!

On the morning of February 18th, 2009, I was on my way to the hospital! Sleeping the previous night was next to impossible, so I cleaned everything in sight! I wanted to bring my new baby home and just cuddle him, and not wanting to lift a finger on housework! We got to the hospital, and I was hooked up to machines, stuck with needles, and bugged by staff every fifteen minutes! I was being induced because my body does not go into natural labor, and this baby inside me was huge! I was given the epidural around noon, and labor was on its way! It just so happened that my epidural was not working at all. I still could feel everything! My labor was progressing very nicely, and around five p.m., this baby was coming! We had a difficult delivery. The baby had gotten stuck. One of the scariest situations I have ever been in. One minute I was pushing, and the next minute, there were doctors yelling at other doctors, to go get other doctors and etc! I had five nurses on the bed with me pushing down on my stomach, screaming at me to push! At that moment my poor husband drops the video camera. The look on his face was one that I will never forget. And at that moment, I knew something was not right. I finally delivered a healthy baby boy! To everyone’s surprise, this little guy came out screaming! (Not expected, due to such a long time in the vaginal canal)

And there he was, a chunky little guy with a head full of hair. We named him Caleb O'Connor Hurd. He was ten pounds and two ounces. He is finally here. Our precious Caleb….