Tomorrow marks 1 month with Bodie’s new, beautiful heart.

A month marked with a lot of ups and downs.

We’re pretty tired and it feels like we’ve been swimming for a really long time. We don’t quite know where we’re swimming to or how long we have to swim at this point. So, we just sort of keep swimming, treading water when we have to.

We’ve had some big wins in the past couple of weeks, most notably with Bodie’s sleep improving and his physical strength increasing. He’s now sleeping well most nights, and has been working hard in PT. He can walk short distances, but still prefers to sit in the wheelchair (give the kid an inch, and he’ll take a mile!). We’ve been doing a ton of trips around the hospital, playing Pokemon Go.

We’re also seeing his personality come back in leaps and bounds. A few nights ago, I heard him laugh for the first time since surgery and I almost cried. I hadn’t realized how much I missed it until I heard it! And he’s been playing lots of Uno with me, and taking daily trips to the play room and teen lounge at the hospital to paint, print cool 3-D projects and do diamond art.

That said, we’re also struggling with some pretty big hurdles, and still need serious prayer.

The biggest hurdle continues to be with feeding and his vocal cords. His repeat swallow study still showed no movement in his vocal cords, and he’s still cleared for only very small tastes of water and pureed foods. The NG tube is an endless source of frustration and discomfort for him, and we covet your prayer for major improvement in both his vocal cords and his swallowing function.

Additionally, Bodie has developed antibodies to his heart that were not there prior to transplant. The team is very proactive at stopping this in its tracks before it turns into rejection, so he had an IVIG treatment earlier this week, to be followed by another in two weeks, and monthly after that until he has 2 or 3 negative tests. Thankfully, Bodie tolerated the 12 hour transfusion well.

Tomorrow is Bodie’s scheduled 1 month post-transplant cath and biopsy. Please, please pray for him. Please pray specifically:

1. For the cath to go well, with great pressures and NO rejection.
2. For Bodie’s vocal cords to heal completely and his swallow function to improve so that he can vocalize and eat and drink normally. The team is planning on a vocal cord injection during the cath tomorrow, but given that it’s still relatively early they are going to be conservative and don’t know that it will make a huge difference. Please pray that it makes a big positive difference.
3. For the antibodies Bodie has developed to respond to treatment so that there is no fear of rejection.
4. For Bodie’s donor family. As we celebrate Bodie’s one-month anniversary with his new heart and the joys that come along with it, I know the donor family is marking the date a very different way, with so much loss and sadness. Please, please keep them in your prayers.
5. For our COTA fundraising efforts. We have been bowled over by the generosity of our communities, in raising so much money for COTA for Bodie so quickly! But as our medical bills begin to mount, the COTA funds will be more crucial than ever. Please continue to pray for funders to come forward to support COTA on Bodie’s behalf!