Second year Day 222 - Tuesday July 23, 2013

Well, today was a hard day, and I've taken my time writing about it!  The morning started off hectic, with Arrianne needing some things for opera and me running around to help her get things together.  Arrianne headed to opera and I ran off to an appointment of mine and left Bridgett and Stephany at the hotel.  I got back just in time to grab lunch for the three of us and then leave Stephany at the hotel while Bridgett and I went to the see Dr. Robert Hoffman at the Primary Children's Hospital.  More about that in a minute.  Then after a couple of hours there, we hit the freeway in time for rush hour and headed back to Provo.  Bridgett and I stopped at Target in Orem to look for a present for Caden, as today is his third birthday.  We also got a present for Connor at the same time, as his birthday is on August 8th.  Next we stopped at Cafe Rio to pick up dinner to eat at the hotel with Jenn and family.  They were already at the hotel, swimming.  We all had dinner together and unwrapped presents, as well as had cake (in the lobby).  Afterwards, they headed for home to put the kids to bed, and we all collapsed upstairs.  So, the doctors appointment.....first let me say that the guy at the front desk of Dr. Hoffman's office is a gem!  His name is Rick. He was just so funny and friendly and had Bridgett joking back and forth from the minute we walked in.  I also listened to him interact with others, and no matter the age, he was just great!  The nurses were all great as well.  Even though we had some wait time, in a room with lots of kids, Bridgett did great.  I chalk that up to the fact that she had her ipad to play games or read and her ipod to listen to and block out the noise!  It worked very successfully!  When we met the Dr.,  he explained something that no one else had yet.  He said that the shunt in the mid brain did indeed cause the parinaud's syndrome (and I think the problems with the optic nerves themselves) but that the reason for the strabismus (misalignment of the eyes) was the high intracranial pressure. He said it caused palsy of the sixth nerve and the fourth nerve.  At least that makes more sense to me than thinking that the eyes are misaligned because of the injury to the brain.  He recommends surgery on both eyes, and then approximately six months later, another surgery on the left eye again.  He said after they have addressed the sixth nerve palsy in these surgeries, then he could address the fourth nerve palsy (with more surgery).  Hmmmm.  I was a little shocked and dazed with all the information.  She has absolutely no depth perception (obviously) and he doesn't guarantee that she would after the surgery.  I spoke of the possibility, in the future, of driving and he said that depth perception is not required in any state to get a drivers license.  That's disturbing I think!  Anyway, I guess I was upset because of two things.  First, he said that even though they do the surgery, she probably would never had full movement of the eyes.  I was hoping that she would be able to move the eyes outward, but he said probably not. Second, he said that because of the traumatic brain injury, there is no way to tell how her brain will handle the surgery. Right now she does not see double at all, but he said that after aligning the eyes she may start to see double and they may not be able to fix it.  Whoa!  So, no double vision now, but possibly double vision then that wouldn't be correctable!  So, that's something to think about.  Something a little bit scary and unknown for sure.  He said there is absolutely no predictor of what will happen and it could go either way.  However, he was in favor of the surgery, as the eyes would be aligned and look normal.  I had some questions, but I wasn't prepared for the things he talked about so I'll have to call and have a whole new set of questions answered I guess.  He said that low vision therapy would be a good thing for Bridgett.  He said that we should consult with Dr. Judith Warner (neuro ophthalmologist) after the surgery for glasses.