Our So-Called Life.

So, we recently had a spine x-ray done to basically verify the curve that Dr. Miller felt at our last visit. Cade indeed does have a 17 degree curve in his spine. Boooo for that. I know Dr. Miller is an expert, but I was hoping maybe for just this one time she was wrong. So, nonetheless, a new diagnosis and treatment plan in action. We will get established with an Ortho Specialist in a couple weeks to develop a baseline for treatment options. I will go the most non-invasive way possible. We are doing some extra PT and Hippotherapy soon. We will be staying very busy!!

As many of you know, our First One Small Step event went very well this past weekend! After many months of preparing and planning, it is over. We managed to raise over $13,000 for FPWR!!! To all the Sponsors, Volunteers, People who donated their time or money, Participants, BRASS...I cannot thank you all enough. Without you our event would not have been such a huge success. What a great was for my family to celebrate Cade's First Birthday. Things will only grow from here! I will be posting more pictures as I get them. The BRASS website has an album from our event with over 800 pictures. Click Here  to view some of those pictures. I also had Tiffany Meeks with Hotshot Photography that took some wonderful pictures which will be posted soon. There were also others taking some photos...Good thing, because that was the farthest thing from my mind. It is so nice to have had wonderful people capturing these great memories. Cade is a huge Elmo fan, I love this picture! Carter runni...

I never really got to blog much about all the fun we had on our trip, so here are a few pics. I will add that results from sleep study are in and Cade seemed to not have much apnea at all, which is great! We will be monitoring for little while at home on a pulse oximeter. He had a few dips in oxygen which is thought to be from the cold he had, but just to be sure we will monitor a few nights. Enjoy the Pictures... Cade absolutely ADORES his Daddy! Carter's fake cheesy smile, Cade's real cheesy smile! I think he was talking to me here..lol They are just gorgeous, aren't they? Sweet Brothers!

OK, so I am kind of late on posting this but I can't go on without a birthday post to my littlest guy! My Dearest Cade, It is unbelievable how just one year ago, we had no idea what lied ahead of us. We thought you were just being observed in the NICU for being born a little early. Our lives would soon change and never be the same again. We would go through different emotions and then finally  when our world stopped spinning, we were able to recognize the most precious gift God could ever give us. You opened our eyes and our hearts to a whole new kind of love. You have made such great strides this past year. You have worked very hard to get your little body to progress and get strong. We are so proud of all your hard work, and we know you will just go uphill from here. When you do hit a bump in the road we will always be right by your side to help you out along the way. You sweet smile and loving personality can melt even the coldest of hearts. Thank You for teaching me wha...

How is this for Awareness!!!  Click here  to check out a story published in The Weekly!

Saw this on a friend's blog and had to post... I <3 this! My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. S...

This video is great!

For all of my facebook friends.... please help FPWR win $100,000!! This will fund 2 more research projects that may otherwise go unfunded! You can help by voting daily at http://www.vivint.com/givesbackproject/charity/26 . Initial Steps for Endorsing FPWR: Log in to your Facebook account, and go to Account (pull-down menu) --> Privacy Settings --> Connecting on Facebook (View Settings). There, make sure that “See your likes, connections, and other activities” is set to “Everyone.” Go to: http://www.vivint.com/givesbackproject/charity/26  (Vivint’s page for FPWR) When prompted, click the “Like” button and the Facebook “Login” button. ( NOTE: If you are not already logged in to Facebook, you will have to type in your login info) Scroll down and click the “Endorse!” button. Steps for Endorsing FPWR each day: Bookmark FPWR's Vivint page: http://www.vivint.com/givesbackproject/charity/26 Visit it once a day, and click “Endorse!” Please tell all your fa...

Click Here  to view a recent publication about PWS featuring Dr. Miller!

So, we had a sleep study done in Gainesville this past Sunday and then saw the Pulmonologist as well as Dr. Miller on Monday. I don't yet know the exact results of the sleep study, but besides Cade and I having to be put through a living nightmare- I think the results were good, or should I say better. I can't imagine that he had zero apnea, since just 6 months ago he was obstructing up to 70 times per hour! The techs that did the study said that they didn't see any significant apnea spells. Now back to the nightmare part. Cade screamed for about 45 minutes straight before kinda sort of drifting to sleep. Then for the next 9 hours he would wake up SCREAMING every hour or so. He ripped wires off repeatedly, oh it was just horrible. I was so close to saying screw it and not doing it. But we got through it and hopefully don't have to worry about another one for a while. Dr. Miller is increasing Cade's calories because she wants him to gain some weight. We know he is l...