Roxanne update

Our trip to Johns Hopkins University Hospital was quite an adventure. Baltimore is about an hour from our house, but it’s so different from the DC area that it feels like another country. (To add to my disorientation, I’ve been watching the HBO series, The Wire, that shows the ugliest side of Baltimore.) So there we were, a family of suburbanites driving through one of the grittier parts of the city in our hybrid car, wending our way to the hospital.

Johns Hopkins is mammoth and crowded. When we first entered the outpatient clinic, we stood in line to get our “patient card” – a charge plate with Roxanne’s name and patient number. We were directed to the neurology floor, and had to wait for an elevator that was empty enough to accommodate our (smallish) stroller. On the neurology floor, we literally took a number, like at a butcher shop or the DMV, to wait to be checked in. This is when it became clear we were very small cogs in a very big machine.

Despite all that, the care we got from Dr. V’s team was excellent. Her associates took Roxanne’s history and collected her test results (from her previous hospital stay) for Dr. V to review. We had heard that Dr. V could be dismissive and abrupt, so I was surprised at how warm she was, and how very sweet (and grandmotherly, I might add) when she examined Roxanne. However, when it was time to discuss a plan for Roxanne’s care, she became businesslike, and spoke quickly. We had to be on our toes to keep up, but thankfully, we were prepared.

I don’t want to go into a lot of detail here, but Dr. V feels that Roxanne’s seizure condition, Infantile Spasms (IS), is not a typical case. Roxanne started having seizures in her first month, not fourth, like most other children, plus her EEG pattern is different than typical IS. The good news is this might mean her seizures are less severe, and therefore, less destructive.

What’s next? Roxanne needs to have another EEG and other tests to narrow down the cause of her seizures, while monitoring her current medicine and considering new drugs. We’re not sure if we are going to need go to JHU for the tests, or if we can do them here in Virginia, but we’ll figure it all out soon, with the help of Dr. Y, our local neurologist. We could very well end up checked back into Fairfax Hospital, where this all started.

Other good news is that over the last couple of days, Roxanne has had fewer seizures per day than ever before, and her mood has been great! She has been smiling, cooing, and wiggling like the wonderful, happy baby she is. THANK YOU to everybody for all your prayers, healing visualizations, etc!

I will try to capture more smiles, but for now, here is Roxy in a moment of repose. Yesterday was a big day.