Today Grace had surgery to lift her eyelids. They’ve been drooping, the right more than the left. Her brain and the muscles in her eyelids just weren’t working together. We were supposed to have the surgery done this summer, but if you’ve been reading along you know that this summer didn’t exactly go the way … Continue reading A black eye and bloody tears- October 26, 2016
This week started out to be the first regularly scheduled week we’ve had in some time; Monday morning it quickly changed. Shortly before taking Grace to her morning therapies and then school she was showing signs of discomfort and then had a tonic clonic seizure. We gave her some diazepam (valium) to stop the seizure … Continue reading To port, or not to port
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!
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
Has Grace had any surgeries? We are asked anytime we are updating records or seeing a new provider. She’s had a GI Tube in 2006 and a Nissen Fundoplication in 2007. She’s had a Corpus Callosotomy in 2010 where the corpus callosum was removed between the halves of her brain…this is usually where jaws drop … Continue reading Has Grace had any surgeries?