First of all HAPPY NEW YEAR!! We celebrated the new year by staying up until 10pm (we're getting old) and watching the ball drop over Times Sqaure. The new year always starts off with Kamryn's Birthday... it's a great way to start each new year! Although 2008 was a tough one... we are BLESSED!! December was one of Owen's best months yet... he's got more energy, he's eating a little more, and he's just never looked better!
We had our first cardiology appointment in 2009 today. Dr. Stock agreed that Owen looks better than he has yet. He's gaining weight (20lbs 7oz), his color looks good and his breathing is just a (tiny bit) less labored. Carson and I weaned Owen off his O2 for the day yesterday, but as the day went on, his sats went down. He went from the high 80's to the low 70's without O2, but it took a good 8 hours. We think he's ready to be weaned, just at a slower rate. Today he is at 1/4 liter and his sats are in the low 80's. I'll take him down to 1/8 liter tomorrow and we'll go from there. It looks like we may say goodbye to those darn oxygen tubes SOON... let's just hope for that!
And you thought I was done... no way! Dr. Stock just called and said that he spoke with Dr. Halnon from UCLA. Owen's antigens are HIGHLY SENSITIVE... not what we want for transplant. He will first get some
IVIG treatments ... click on IVIG to read about it... it's an iv administered immunoglobulin. Then they are also going to start him on some
rituximab... click on Rituximab to read about it... it's also administered through iv and is a type of chemo. We're not sure exactly when he'll get his treatments, but he will be admitted to the PICU ... hopefully in Arizona... and we PRAY that they work!!! Neither treatment is highly successful... the rituximab can cause immunosuppression... and I can't imagine he'll feel very good afterwards. We should hear back from cardiology by next week with a timeline of when to start these treatments. I also pulled
THIS LINK from our heart friend Lindsay's blog because she too is going through pretty much the SAME thing as Owen. It explains everything in a bit more detail.
We are fortunate that Owen is home and doing so well that he doesn't NEED the heart at this time. Up until now, time has been on our side and we will get his treatments.. PRAY they do some good...and when it's time that he NEEDS a heart, he'll be in the best condition to get one. We know it's all out of our hands... we are just along for the journey!!
Have you ever tried holding an (almost) one year old while trying to crack and eat crab?? Owen took every opportunity to smash his hands in the butter and eat the crab claws. Did we mention that he takes after his sis and LOVES crab? 
The weather was GORGEOUS today... 70 degrees and just a little overcast. 
Kamryn made her OWN birthday cake this year. It was DELICIOUS! We did a grown up family party with Grandpas and Grandmas tonight.... what are we going to do with ALL the gifts?!
To be continued next weekend... she's having a PAJAMA PARTY with her friends. Happy Birthday Kamryn! WE LOVE YOU!