"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Sunday, May 8, 2011

May 23, 2011

We're still trying to get Benjamin's seizures under control. I remember writing a paper in grad school on the rising prevalence of medical errors and unfortunately I can say we've experienced this firsthand. We asked Benjamin's GI doctor last week if we could increase the drug he's on for gut motility because his reflux is out of control again. He said we could, but asked what seizure med Benjamin was on because the Erythromycin can interact with certain drugs. Well, although we fill out med sheets every time we have an appt. at Children's, his neurologist said she was unaware he was taking the Erythromycin. Regardless of whether or not she actually reads the med lists when we visit, her team was giving him both medications when he was admitted to the hospital over a month ago! I can even remember one Fellow or Resident asking us when she was signing off on the discharge papers why he was on the Erythromycin! Hello??? Are you kidding me? There should have been sirens and blinking red lights going off in the room! Anyway, to make a long story short, there are now only two seizure medications Benjamin can try that aren't metabolized by the liver (and therefore will have no interaction with the Erythromycin which is the only drug used for gut motility at the moment). One can cause permanent peripheral vision loss and the other can cause heart problems. His neurologist was anxious to start one of them, but I told her we needed to wait and talk to Benjamin's ophthalmologist before we made any decisions. We're planning on talking with him tomorrow and hopefully then we can come up with a new plan

On a positive note, we weaned off the Keppra about two weeks ago and what a change in Benjamin's disposition! He’s starting to smile more and will almost laugh when we tickle him! He’s not doing anything a baby his age would normally be doing (rolling, crawling, sitting, playing with toys or babbling), but he most certainly has a wonderful personality.

We just ordered him new glasses because his prescription went up again. Poor little guy. I’m not even sure they make a difference, but we’ll continue to put them on him. His EI therapist brought him a special suit. It comes in two pieces that velcro together and it's designed to help give him some “sensory input” and make his trunk stronger. The material it's made of is really stretchy and almost feels like a smooth rubber on the back, but it's completely breathable. He’s also getting fitted for leg braces soon. He’s going to have to wear them the entire day. That breaks my heart because I know he’s going to hate them, but at this point we have to be proactive and stretch him as much as we can so he doesn’t develop contractures.

I can't wait for some warm weather so we can go out for a walk! When we did have some sunny days, he seemed to enjoy the outdoors (as long as the wind didn't blow). It would be great if he could sit in a bucket swing, but I'm not sure we're quite there yet! I tried one of those jumpy seats that goes in the middle of the doorway, but that was pretty much a disaster. First off, he can't "spin" because that can bring on a seizure; and second, no matter how much padding I stuffed around him, he still fell over. Needless to say, that thing was quickly tossed down the basement stairs!