We had a medication mixup. This post explains how things can happen, no matter how careful you are.

I wanted to let everyone know that despite the really rough start, Gavin's IVIG Infusion was successful.  I want to thank his nurse for doing such an awesome job.  With…

I wanted to update everyone on a pretty significant change to Gavin's meds.  One of the things that have been causing or contributing to Gavin's sleepiness in the mornings is…

Tonight we had a really bizarre occurrence that ended with me overwhelmed and freaking out.  It started out with Gavin coming downstairs and asking if his vision getting blurry means…

During our last appointment with Dr. Moodley at the Cleveland Clinic, there was a medication change that was scheduled to take place today. One of the treatments for Gavin's Autonomic…

I thought that it might be a good idea to bring everyone up speed on everything that is going on with Gavin. I've got a ton of new readers (thank…

I wanted to give you all a peak behind the curtain, so to speak.  Every Monday night, we have to refill Gavin's pill dispenser for the week.  We go one…

In but  a few hours, we will be making the trip to the  Akron Children's Hospital Heart Center.  We will be meeting with Dr. Clark, one of the top pediatric…