This is going to be a short post, but I just wanted to give a shout out to all those that have donated to James’ medication fund. We are extremely grateful for all the love and support we have received, even from people we have never met. There are days…
If you read yesterday’s post, you know our dilemma. If not, let me give you a brief synopsis of our situation. James was diagnosed with infantile spasms, which are a type of seizure in babies. The neurologist prescribed ACTH, which is supposedly the best drug to treat infantile spasms. Unfortunately,…
Are you fricking kidding me?! Fricking was not the word I wanted to use, but I thought I should keep it clean. I really wanted to use another “F” word…and a few other four-letter words. Before I get into why I started this post with such strong language, let me…
When James was discharged from the NICU and was finally able to go home, we received a bunch of equipment from home health. Everything James needed to survive outside the hospital: pulse oximeter (pulse ox) that constantly monitors the oxygen saturations in his blood as well as his heartrate; feeding…
Well, crap! James had an appointment with his neurologist today and when Stacy showed him the video of James’ "quirks", he thought they looked like infantile spasms and wants to treat them as such until we get a confirmation EEG. Wait a minute! Let’s back up for a second. On…