Holding Pattern

Below is the latest from Megan:

We don't have any major news on Ella, still waiting for what we hope will be a very productive and information-gleaning neurologist appointment in eight days. We go for the EEG on Friday, but I don't expect that they will be able to tell us anything right then; we will instead get the results from the neuro. After the pediatrician upped Ella's medicine on Thursday and a short adjustment period, E went almost 48 hours without seizures. They've started to breakthrough again in the last few days, about four to six times a day right now.

I wrote the following on my facebook page yesterday:

"I wanted to update, but I don't want to sound despondent or hopeless. I'm actually in a pretty good place right now.The seizures that she's had since starting the medicine are not as bad as before we went to the hospital, in my opinion. They used to come in clusters and now they are rare and isolated events. This is incredibly encouraging to me.I think we can manage with just a few breakthrough seizures if that's the best we can get with the medicine, but if we can find a dose, a different med, or a combo of meds that gives her seizure-free days for good, that of course is the goal.(She's at the maximum recommended dose (mg/kg/day), but her blood level was low enough last week, that maybe there's room to increase it yet?)I told Chris that I think (and hope) that this waiting period before our first appointment with the neurologist will be the most uncertainty we will experience."

Chris asked if there were any specific prayer requests that we could share regarding the EEG. First off, they want her to be sleep-deprived. (How exactly do you do that? Isn't it that they only sleep when you don't want them to? :) Please pray that I would know how to manage her day so she will stay awake and meet this requirement. For the test itself, pray that they would get a good reading and get it as quickly as possible. I think she may have to be strapped down during what I understand is--best-case scenario--a twenty-minute evaluation, so it is important to me that this be swift. Pray that she will hold still and not be too upset. And finally, please join us in praying that it is a normal EEG. True, if there is nothing to be found on the tracing, we may not get a diagnosis right now, but a normal result may be able to help the doctors rule out some of the more serious types of seizure disorders, which is our hope.

Thank you for checking in on us.