Jacob movin' about

So the little man is finally starting to feel a little bit better -- yeah! The top of his mouth is finally closed up - even if there's still gross looking stitches there! I cannot wait for him to start talking - that's next... Here's some video of my little happy man playing with his sisters...

Here's another one - he's such a sweet baby!

AND THE REST OF the crew- this one (at the end) shows how jacob moves about (hence the name "scooter"!

home again

***The pictures are upside down - the first one is the morning of surgery - in the recovery room; the second picture is actually the night before surgery (can't you tell? he's happy!).***

You know, Shriners hospital is just the most clever hospital ever! They just take such good care of all these kids who have a myriad of "issues" affecting their health.

Jacob's surgery went really well and he is finally beginning to show signs of healing. He is even smiling a little bit, and the swelling in his mouth is going down enough now that he can close his lips. I do so wish he could take his pacifier though - that's been the biggest loss. It's been so MUCH harder to get him to sleep (and he's used to it and wants it!)

I am so thankful for modern medicine and being able to have great surgeons to take care of his palate... however, I am REALLY hoping that we are done with surgeries for a while. He's only 16 months and has been under anethesia 4 times (3 of those being for surgeries) - and each time he goes "under", I gain 10 pounds and lose 2 nights sleep. I do love that little boy though - so, in spite of all my complaining and murmuring, he is so worth it!

Next up for him is his wheelchair -- I put him in his stroller the other day and he tried to "roll" it with his hands... right idea, wrong chair! Hopefully soon though!

today is the day

So today is the day! I'm getting ready to head out the door to portland - up on that beautiful hill where Shriners hospital sits. Jacob is getting his cleft palate fixed and mommy is very, very anxious. I just hate how after his surgeries he's so cranky (yes, I know I know - it's natural and their in pain) - it's just mommy being a bit selfish and wanting my happy baby back. On the plus side, it's like a mini-vacation from the house, and the piles of dishes and laundry... and the hubby has to play mr. mom! Here we go!

its wheelchair time

Yesterday the disability seating company came and measured the doors for accessibility - it's time to get that little wheelchair made and sent to my baby cakes.  The wheels are only like 16 inches tall and the seat is tinier than a car seat, BUT he rolls that sucker around and makes my heart melt and makes me cry a little bit.  I'm sure if he were older he'd tell me to knock it off and that I was embarrassing him!  I can't wait though - it's so tiny and he'll finally be able to get around with the other kids (like getting up to the table).

One week from today is Jacob's cleft palate surgery - again at Shriner's hospital in portland.  I have a bit more anxiety about the palate than I did for the lip -- that involves breathing and the lip didn't.  Plus we have to go back to the arm restraints and I hated those - he wasn't to keen on it either... I am trying to focus on the benefits and blessings though - instead of how hard it'll be at first.   I'll post pictures and an update next weekend after the surgery.

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!

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... !