We aren’t out of the woods yet – but we can see daylight. Our visit to see the surgeon in Minnesota this past Thursday didn’t exactly go as we’d planned. The surgeon ended up being stuck in an operating room and not able to see us. Grace had a few x-rays and a test of … Continue reading Out of the woods
The four of us are together. We are working to enact Graham’s “when Gracie is home plan”. Tonight that means watching the Odd Squad movie as a family. It feels like she’s home just in time. This morning on the way to school Graham told me that he didn’t want there to be any more … Continue reading Grace is home!
Grace took her normal feedings and water intake today without any issue, which means she is on track to be discharged tomorrow! The only thing we have left is to draw blood for some lab tests. While they need to check general levels we also need to test her levels on her anticonvulsants since she … Continue reading Blood Draws & Penguin X-rays
When Grace first got her helmet I cried. I cried a lot. I was so sad and even angry about it. Today when I was at work Kevin sent me a picture of Grace wearing her helmet – and I actually wanted to cry because I was so happy to see her wearing it.She hasn’t … Continue reading Dust off the pink helmet
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