Gavin's only been home since lunchtime but already, my fears are being realized. Things for Gavin are worse than I realized. I've been monitoring Gavin's heart rate, either through the…
Gavin had a pretty good day. He was apparently tired but only slept for a little while. I'm not sure about the whole bumping his eyebrow thing.... The point of…
I feel pretty accomplished today. Of course, I probably could have done more today but I'm proud of myself nonetheless. After getting Elliott off to school this morning, I spent…
A day can make so much difference. I received a call from Gavin's immunologist, Dr. Wasserbauer. She was returning my call from yesterday. She likes to personally return phone calls…
I spoke with someone from the A-T Clinic as John's Hopkins in Maryland this afternoon. I learned even more information than I had before. Her gut says that based on…
I just had a 30 minute conversation with someone from the A-T Children's Project. Aside from Gavin's immunologist, this is the first time I have been able to speak with…
When you are a special needs parent, it's so important to make connections to others going through similar things. When you're a parent to a child with extremely rare conditions,…
Both Elliott and Gavin will be returning to school in the morning. There's always that transition period because of the long weekend but I think they will be just fine. …