Day 1 of Phase 1

So we arrived at Miami Children's Hospital at 7 am to check in and have an MRI. We went in and did all of the paperwork, took vitals, and sat in the waiting room. After a while we were informed that the MRI was broken. They had ordered a part and were waiting on it to be delivered. Should be 10 when it is fixed... Little ones who can not hold still on there own, have to be sedated, which means no food for 6 hrs. Now try to explain to a 5 mo old "mommy can't feed you yet..." They went ahead and took us to a room on the floor we would be staying on. Dr's and Nurses came in and took more info, and set us all up. Then we were told the machine would be fixed around 12. It was a pretty rough morning, but the nurse practitioner told our nurse to start her IV, so they took her in and got that going. I was not in the room, but Kari told me that they only stuck her once. The picture above is for Olivet and Ivy, her IV is held in place with a princess. Once they were done with the IV, Avangeline was very tired, she fell asleep. So I decided we would hold out for the MRI, the Dr was ready to reschedule for tomorrow. They finally came to get her and long story short she left us for the scan at 2. Then while she was being scanned we were moved to a different room, and ate some lunch.

The scan took forever!!! I was not able to see her till 5:30. While she was still groggy from the sedation the EEG tech started putting leads on her head. She is hooked up to a EEG machine, that is reading her waves, and is being videoed. We have to push a button any time she has a seizure. This is the hat that is holding all of her leads out of the way. Kari thinks she looks like a Vegas show girl. With all of her other EEG's they just stick the leads on with gel, then pull them off. These a glued on, with stuff that smelled like model glue. I would like to know how many weeks it will take to get it all off... She is now sleeping. Tomorrow we will be having a SPECT. (Google it, I can't explain). Pray that we do not have a repeat of today with the waiting game as she will not be able to eat again until it is complete.