Saturday, December 20, 2008


So jacob has gotten into this thing of lifting his bum high off of the ground every time he scoots -- it is sooo cute! The kids have started calling him "hoppy" and man that baby can go fast! his upper body is so strong and he just pulls himself along!

He is scheduled for surgery on his cleft palate in January, again to be done at Shriners hospital in portland, oregon. He has a different surgeon this time, a cute little japanese lady-doc, so it'll be interesting to see what happens. The doc that did his lip was AMAZING - that's a lot to live up to!

Then in february, he is again going to the spina bifida clinic at Doernbechers hospital for children (also in portland, oregon) - they'll be doing another ultrasound to check his growth and development. Marshall and I are just amazed that he can stand at all! He just "posts" himself on his short left leg and the right leg just kind of hangs around checking things out. He is so determined and wants so badly to keep up with his brothers and sisters - if they go upstairs he sits at the bottom of the stairs and yells at them until someone comes down and gets him!

He is growing like a weed, but still so small for his age (16 1/2 months). He's still in 12 months pants and they're way too long for his little legs. He still can't wear shoes, but unfortunately, has figured out how to pull of his socks! He's a bit beefy up top because that's where all his strength is - and of course, coming from me, he has a humongous head :D .... Oh and his wheelchair is getting made as I write - the wheels are going to be 16 inches from the ground -- how cute is that??? I almost cried when he test "drove" one at Shriners -- he's going to be my little scooter lightning!

Tuesday, May 20, 2008

and then there was six


In August of 2007 our little man Jacob was born. We had no idea that our lives would be so drastically changed by this precious little baby. After time in the NICU and a parade of doctors and specialists, we learned that Jacob has Caudal Regression Syndrome, also known as Sacral Agenesis (type 3-4). He also has a cleft lip and bilateral cleft palate (his lip was fixed in April of 2008).
Since that day it's been a roller coaster ride of doctor visits, hospitals, clinics and surgeries. We learn something new about his condition all the time and now know that he will never be able to walk. He has scoliosis, contracture of the legs, hip and spine deformities and the list goes on. This amazing child has taught me so much about myself in the past 8 months and I'm so thankful that he has come into our home.
This blog is for him - to report on him and to simply write about what his "goings-on" are... !