Grace’s epileptologist, Dr. Doescher is moving on to new opportunities where he will no longer be providing patient care. While we are happy for him he will be greatly missed. He has played a crucial role in not only Grace’s life but also ours. We have both written a blog post to help ourselves process … Continue reading We can’t tell Grace’s story without you
Last week Child Life sat with Graham and while using a special doll with a port they helped explain Grace’s port surgery. Graham was able to push medicine (water) in through the port and then drawn back blood (it turned red). He’s talked about it a few times since then but the best part was … Continue reading Duck
Today Grace was transferred off of the PICU to a general floor. While she no longer requires the care of the PICU staff it should be a good thing to celebrate but it was more of an upside down, crazy train commotion than it really seemed that it needed to be. We have found ourselves … Continue reading and some cookies too!
Today was a big day for Grace. She is no longer connected to a pulse ox, ECG, and drum roll please…the NG-tube was removed! So many fewer tubes and wires to contend with all at different angles are a welcome change. She has also started a slow feed of Pedialyte (just 15ml/per hour) and we … Continue reading Tambourine Girl
We are home. We made it home last night. Dr. Monkeyology has returned to his spot in Grace’s room. He has once again upheld his responsibility of protecting her and serving as her comfort item during a tough time. When my dad told Graham that we were headed home he insisted it was time for … Continue reading It’s been a pleasure to know you but I hope to never see you again.