To Eat Or Not To Eat...

Mom and Carter at UCLA

Carter and Bennett playing at dinner

Carter eating pizza...YES, eating pizza for dinner

Carter had a GREAT night sleeping last night from about 9pm to about 7 in the morning. He had gotten a reputation for those who slept with him at the hospital as a major spooner (...or a "lay on top off you-er"). At CHOC he was extremely restless most nights but last night got a tremendous rest and as we write this post, Carter is asleep without a peep. Being home has truly been wonderful for our family. Certainly, we were/are very nervous about managing Carter's in-home care but it's great to see Carter and Bennett interacting like they used to do. Last night it was a shock to be home and hard to imagine the days and months ahead but after a good rejuvenating night sleep we felt more confident about our challenges. We feel like home is going to be some of the best medicine for all of us throughout this journey.

We also found ourselves slightly more organized at home. As we mentioned yesterday, we brought home half the pharmacy and hospital with us. Today we sorted through how we will use all of these tools and where they will be best stored. It's a lot of stuff and if you've seen our garage...space is limited!

Eating...Today Carter asked for Dad's waffles but ate about three bites, and had a few crackers for lunch. With that said, he was pretty impressive at dinner. Carter ate a good portion of Newman's Own Cheese Pizza. Thanks Paul!! As we are eating, we try to play it cool if Carter starts eating anything. Tonight, we had a little sense of relief that maybe his appetite will come and go. However, our problem may be a little too late and the NG tube could be in our future. We are taking feeding tips from some of our "cancer friends", with tips from their kid's bouts with lose of appetite. Whatever might work we'll try and we're still holding out hope that we can get a ton of calories in Carter by the end of the week!

Lastly, we made our trek to UCLA to see their liver transplant team. While we hope a transplant is not a part of our treatment, it was great to meet a member of one of the most prominent liver transplant teams in the world. A little background...UCLA's Liver Transplant Team was founded by Dr. Ronald Busuttil in 1984 and has performed over 5,000 liver transplants. Dr. Busuttil has personally performed over 2,000 liver transplants and is internationally known for his surgical expertise and clinical acumen. At the end of the day, this is the place to be if you need a liver transplant!!

As the doctor today mentioned, we will have a decision tree that continues to grow through Carter's treatment. We are now at the beginning of this tree. Many decisions will arise in the coming weeks/months as we begin to see how things progress. We know we must take it one day at a time.

Thank you everyone for keeping us in your thoughts! And thank you Krista, Kara's sister, for your help in our homecoming last night! Bringing Bennett over as we arrived and just starting to fold our laundry, feed Bennett dinner, give him a bath and put him to bed without us even asking was SO much appreciated!!