When people ask me how Grace is doing a lot of times I respond by talking about how grateful I am that she’s been out of the hospital this summer. Facebook has been reminding me everyday lately about Grace’s surgery, a trip to the ICU, and all the complications of last summer. I have to … Continue reading Chasing the Noise
Around Christmas time Kevin and I decided that we were going to take Grace and Graham to Disney World. It was pricey, it was intimidating, we were experiencing much unrest about the world, but it was time for us to do something fun. We quietly planned, telling only a few people initially. In some ways, it felt … Continue reading So this happened…
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
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!
Grace is still in the ICU. The ICU has been an interesting place to be. I’m grateful that this is the first time that Grace has needed this level of care. She is constantly being monitored. I feel like we are relearning things about her as we work to get her back to where she … Continue reading Ridin` the range once more – ICU Update