It has been two weeks of steady progress as Jacob continues to navigate life post-transplant. He is settling into his new routine and has been putting in the work at therapy. Between Speech Therapy, Occupational Therapy, Cardiac Rehab, and school his days are full, but he’s finding his rhythm. We are seeing his strength and stamina return along with a new energy that simply wasn’t there before.

In OT today, Jacob was able to write his name with his right hand for the first time! Just after transplant, he was unable to lift or even feel his right arm below the elbow. Today, he is able to raise that arm above his head and the feeling in his hand and arm is slowly returning. Though he still struggles with a tremor, especially when tired or frustrated, he never gives up. Seeing him successfully write his name was a powerful reminder of just how far he has come.

He also had a big emotional win today as Jacob visited his PCP for the first time since his transplant. This office has been part of Jacob’s journey since he was a baby and he shares a very special bond with his doctor and nurses there. For the first time in nearly 17 years, Jacob walked into that office with a fully functioning heart and did not set off the O2 alarm. To see him in a place that has been with him through every post-hospital visit and every concern was truly something special. Just knowing how much they support him outside of their medical roles, from praying for him, thinking of him, and advocating for him, means everything to our family.

Tonight, Jake is headed back to St. Louis. Tomorrow morning, he will undergo his final biweekly Cath and biopsy. If this Cath shows stable pressures and no signs of rejection, we will get to move to caths every 4 weeks! Reducing the frequency of these procedures would be a huge step toward a more “normal” life for him.

Again, we are leaning on our faith and this amazing community. Please pray for God’s protection over Jacob during the procedure tomorrow, a smooth, surprise-free morning for his follow up testing, and clear results showing stable pressures and zero rejection. If you take nothing else from Jacob’s journey, let it be evidence of the power of prayer and God’s immense love.

Thank you for your thoughts, your prayers, and for lifting us up every day.

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7