Some updates - all in one post!

Callie's PET scan went pretty well.  It was a rough morning and it took 4 IV attempts before they were able to get her hooked up.  Because of the trouble the anesthesiologist was brought in to place the IV.  She a real peach bossing the nurses around, so it made the whole setting a little uncomfortable.  Eventually we made our way to the room, and they took Callie away awake.  I was a little nervous, but I'm assuming she did alright.  They then sent me away to the waiting room, and told me they would come get me when she was done because they didn't have a room for her.  I was really nervous about her waking up without me there.  However, the tech came and got me immediately, so I was there pretty quickly as she was coming to.  She then slept in my arms and we got to go home about 2 hours later.  While I haven't heard from the Neurology department, we are seeing our Pediatrician on Friday, and she should have a copy of the final report then.

The day of the PET scan, I made a little pit stop by Patient Relations department.  We have had an on going issue with Callie's Resident Neurologist.  Without going into the long dramatic details, she is the reason it has taken over a year to get Callie diagnosed.  Match that without a consistent attending, and you have a giant mess.  While a solution had been in the works, the department once again dropped the ball.  I complained to the office manager, and she basically ignored my call (which has happened before).  After speaking with the Patient Relations rep, he assured me we would have a solution.  Within a day, we had our solution.  The head of Neurology that finally diagnosed Callie was going to be her primary neurology doctor!  This is amazing news.  We could not be happier.  The only concern is that Neurology has yet to publish their 2012 schedule, and we do not have Callie's January appointment yet.  This is concerning to me because they do tend to fill up very quickly.  I assured the office manager that if I didn't have a phone call by Dec, I'd be calling her back.  I don't think she wants that....

We had Callie's first therapy appointment yesterday.  The therapist is working on Callie's fine motor skill, her ability to use her left hand more, her shoulder stiffness, her trunk (ribcage) stiffness, her overall upper body weakness, and her restricted neck movement.  She is very nice, and Callie really likes her (and her fun toys).  The therapist comes to our home weekly.

Finally, we started the melatonin on Sunday.  So far, its doing nothing, which would lead us to believe that her night time crying while asleep is due to seizures.  However, we need to give it a solid 3 weeks before we can truly rule anything out as far as parasominas.

So much has happened in 4 days - it seemed like I may never catch up!