I am so stinking proud of this kid! He’s doing so great! He had a clinic visit this morning, and all of his labs and echo looked great. He even gained 3 pounds since his appointment last week! He’s actually gained 8 pounds since being discharged from the hospital less than a month ago! He’s now 5’6″ and 104 pounds! We even dropped one of his formula feeds a few days ago, so he’s down to just one formula feed through his NG tube in the mornings and then all of his other calories are coming from him eating by mouth! (The NG tube will be around for awhile to help with hydration, but it’s so great he’s not relying on it for nutrition as much!)

In the newly transplanted world, the two biggest sins are to lose weight too fast and to gain weight too fast. Gaining weight too fast can be a sign of heart dysfunction rather than true nutritional growth. Usually you can see some degree of that either on the echo (his looked great) or on physical exam (fluid overload can show up as puffiness – but he looked great on exam as well). But these cardiac kids are tricky and they can hide fluid. So the definitive test is the cardiac cath. Luckily, he already has that scheduled for this Wednesday.

We’re hopeful based on how well he’s eating and how great his endurance is that everything will look good. But we covet your prayers that his cath goes well, his pressures look good and the biospy results will be negative for rejection.

After his cath on Wedneday, he will have a 12 hour IVIG injection to help reduce his Donor Specific Antibodies. He will have those monthly until he gets 3 negative DSA test results. His last IVIG treatment knocked him out and his energy wasn’t fully back up for 4 days. Please pray this treatment goes smoothly and he recovers more quickly this time.

In the past couple of weeks, his endurance has grown in leaps and bounds and it’s been awesome to witness! He’s still not at 100%, but it does feel like he’s really healing! We’ve taken advantage of it to start exploring some.

Last Friday, we drove out to Half Moon Bay and walked down to the beach.

(Yes, that is Bodie sporting my awesome Sisters by Heart sweatshirt!)

The access paths down to the beach were a bit steep, and Bodie did great going both up and down! And once we were done, he waded into the water. He commented that the water was cold but “bearable” (something he’d never been able to say before, as his lower profusion made his hands and feet particularly sensitive to really cold temperatures). We even managed to be there at the right time to watch sea lions playing in the surf!

On Saturday, we drove to the other side of the bay and Bodie walked up a really steep incline to see the nice view of the bay (he REALLY didn’t want to do it, but his body handled it way better than I expected!). I was really proud of him! It’s kind of hard to get a sense of how steep it was, but you can kind of tell in the second picture, by how far away the cars are.

And yesterday, we went to the car wash. We found a DIY carwash and really gave the van a good cleaning. (It was all Bodie’s idea! The car was so filthy and he was pretty embarrassed to be seen in it. Back home, in the country, everyone’s cars are dusty and dirty, so ours fit in a bit better. But up here in the city, everyone’s cars are so nice and shiny all the time – our van definitely stuck out like a sore thumb!) I was so impressed with how much energy he had to help was the car. The power sprayers were fairly heavy and a bit unwieldy, but he did great!

(I’m sad to say the carwash didn’t remove the dent or duct tape from the side of the car, but at least all the bird poop is gone!)

It’s been such an answer to prayer to watch Bodie’s spirits improve and him to continue to heal! It is never lost on me how different our outcome could have been, or how things can still change very quickly. Although Bodie is looking really good from the outside, he is still very much in the riskiest stage of recovery (the first 3 months post transplant, where rejection risk is the highest). And rejection doesn’t always come with any warning signs. So please, please continue to pray for Bodie as we head into his cath, biopsy and IVIG this week,

This week is a big week, and there’s a lot riding on it. Please, please continue to pray for Bodie’s safety and healing during his procedures this week. And as you are praying for Bodie, please also pray for his generous donor family. As we get ready to celebrate another milestone with this new heart, another family is mourning another milestone lost with their precious loved one. Please, please pray for extra comfort and grace for them this week.