Friday 5/18/12
May 18th, 2012Okay. Yesterday was quite a long day. Warren’s CT was at 2:00 followed by an appointment with our neurosurgeon at 2:45. I think we actually saw him around 4:30. It was a lot of sitting in the waiting room… a lot! We didn’t get home last night until 7:30. Long day for everyone, but fortunately my dad was with my wild child having a blast here at home!
So, no shunt. Hallelujah! The CT scan from last September actually wasn’t too different from the one yesterday. That is good news. There is one ventricle which has definitely grown, but Warren’s brain is everchanging. Our neurologist actually came into the appointment, too, and oddly enough he seemed more concerned with the scan than our neurosurgeon did. Both agreed that there’s some concern and a need for further delving. So, they want to schedule Warren for an MRI. That will be a long day because obviously Warren must be sedated for that. It will give them a more detailed look into his brain and how the ventricles actually look (i.e. if any pressure is being applied, etc.). We were supposed to have a 3-day EEG at the end of June where we actually bring him home with the EEG, but that has now been changed, too. They want to admit Warren for 3 days into Duke and do a video EEG there. Ugh. These are both extensive tests that will hopefully give us some answers. Honestly, they’re doing more than I thought they would. We’re going to increase his seizure medicine, too, but Craig and I agreed that we’ll do that Sunday once we get home. That’s where we are. They should be calling me in the next day or two with the appointments, as both docs want the test done within the next couple WEEKS. Yikes! Dealing with the hospital doesn’t sound like fun for anyone! I’ll keep you posted.
Otherwise, we’re holding steady. Warren is having some seizures just about every morning, but they’re not too big and pretty fast. Who knows?
Going backwards a bit. Hopefully, you moms out there had a wonderful Mother’s Day Sunday. My boys made me feel super special and extremely loved, although my heart was quite heavy… heavier than I had anticipated thinking of my sweet Collin and Miller. Monday was Craig’s birthday, so my sister gave us a dinner date out (a surprise to Craig). Tuesday was appointment day with one at 9:30, 11 and another at 1. Hard to get anything done in between those times, so it’s been a bit of a whirlwind around here. Yesterday, of course, we were at Duke for the better part of the day which brings us to today. So glad it’s Friday, but there’s no rest around here. Craig and I leave at 8AM for Charlotte tomorrow where my crazy husband will be running the Warrior Dash. That means a lot of cleaing… lots of prep work to leave the boys… packing for us… laundry… ya know, never a dull moment especially with an 18-month old “helper”. It’s 7:17 AM and the first load of laundry is in, sheets are being changed, items being put away from our trip yesterday and the day has definitely begun (that was in part to my sweet little one calling “Ma Ma” before 6 this morning).
So, that’s where we are. We’re both looking forward tomorrow, as my mom has McManus kid duty! Woohoo! See ya boys! Daddy and I are ready for a 28-hour respite. We hope you all have a wonderful weekend (and one where you don’t end up covered in mud!) See ya next week!
Craig, Amy, and Warren