Updates have been harder to write lately because we still aren’t able to share the news we’ve been hoping for. We’re still waiting.
One of the biggest challenges right now is maintaining access for the medication that keeps Sofia’s heart pumping strong. After so many months, we’re running out of good options. She recently had some pretty painful skin breakdown under her PICC line securement device, and there was concern for infection. Thankfully, her labs have looked good so far, and the skin has drastically improved. Her line is showing a lot of wear and tear, so her team is working with Infectious Disease and Interventional Radiology to come up with the best plan moving forward. For now, we’re just grateful this line is still hanging on.
Despite everything, Sofia is still in such good spirits. We’re so thankful for all the fun hospital activities these past couple of weeks that have helped keep her busy. She’s especially been loving crafts and painting lately, and it’s been so sweet to watch her creativity shine.
We’re also incredibly grateful for our neighborhood community, who are going above and beyond tomorrow for the fireworks show. We truly can’t thank our neighbors enough for all of their love and support.
As always, thank you for continuing to pray for Sofia. We continue to trust God’s timing and hold onto hope. ❤️