Right Now

So, right now, we’re just waiting.  We have an appointment on April 5, and we’ll talk to Ellen’s doctor then about which medication we’ll be adding next.

He still wants to do the spinal tap, but the neuroimmunologist said that given the fact that the seizures are now on both sides and Rasmussen’s isn’t the leading diagnosis, it isn’t urgent.  He even said that in his opinion it was an “optional procedure.”  He did defer to Ellen’s doctor, but I’m not really that interested in putting her through that right now.  They called to schedule it a few days ago and I told them we’d call them when we were ready.  I guess we’ll talk to him about it at the next appointment.  If there is some very concrete information he is looking to gather, I guess we’ll think about it, but if it is just for curiosity’s sake, I’m not in any rush.

John and I both realized a couple days ago that the hemispherectomy is off the table indefinitely.  It’s unlikely that she has Rasmussen’s now, but even if she did, the hemi wouldn’t be an effective treatment anyway.  It is nice to know we won’t have to go down that particular path.  It does still feel overwhelming that so many paths are still open.  But none of the treatment plans on the table right now are on the same scale as that irreversible surgery, so we feel very lucky.  It is still possible that she will require surgery at some point, but everything after considering hemispherectomy seems like a relief.

Otherwise, we’re hanging in there.  I have the distinct feeling that all of this would be easier if I could sleep.  I remember sleep so fondly.  I think I really enjoyed it.  Come back, old friend!  Unfortunately, our sweetie boy continues to have trouble.  He actually slept pretty successfully last night from about 1am-5:45am, so that’s something.  Unfortunately, it took 45 minutes of nursing/rocking/patting/shushing/tylenol to get him down without screaming, and I’m up at 5am, so that’s not exactly the best night’s sleep I’ve ever had.  I’m not sure if he’s getting sick, or a tooth, or just having allergies like I am, or maybe has some water in his ears from the bath, or what.  But he’s snorfly and ear-rubby.  I gave him tylenol at 12:30 last night because I wasn’t sure if something was hurting and that may have been the reason for the good sleep.   Coffee, my sweet, sweet mistress.