Today brought a few small steps forward, and for that, I’m holding onto hope. Presley is doing a bit better overall. Her pain is more manageable than it was in the first 48 hours, which feels like a huge relief after seeing her suffer so intensely. She’s now on nerve medication due to heightened pain and sensitivity in her feet — even the lightest touch causes discomfort, which is something they haven’t typically seen post-SDR. The team is closely monitoring it and staying proactive.

Her migraines have been one of the hardest parts today. She experiences intense head pain when she sits up, which the doctors believe is due to a spinal fluid imbalance caused by the surgery. If this doesn’t resolve on its own over the next few days, they’ll be investigating the possibility of a spinal fluid leak, which could mean another surgery. For now, we are taking things one day at a time.

Physical Therapy came in to work with her today, and they tried to get her sitting up with some gentle exercises. We almost had her sitting independently, but it brought on too much pain and nausea. That said, she’s been able to tolerate sitting up in bed for a few minutes at a time, which feels like progress in the right direction.

She’s still on IV pain medications, as she isn’t able to tolerate much food or liquids yet. Her body is working so hard, and I’m just in awe of how kind and gentle she continues to be with everyone through this process. She’s been so brave — but today she said she just wants to go home and see her family, and it broke my heart a little.

This journey has been emotional, exhausting, and so deeply humbling. We’re incredibly grateful for the care team at BC Children’s Hospital, and for all of you who continue to hold us in your hearts. Your messages, prayers, and love are felt here every single day — thank you for reminding us that we’re not alone.

I’ll continue sharing updates here as we learn more. Please keep Presley in your thoughts as her body continues to heal and as we navigate the unknowns that come next. Your support means the world to us.

With love,
Paige & Presley 💛