Reagan has been a sweet girl again today. She slept all night last night despite her stupid pump going off 3 different times (it kept getting kinked)! She woke smiling around 8:15am and has been such a good girl all day. She had speech this morning and started getting groggy toward the end of it. She took a nice 2hr nap from 12:15-2:15pm. She probably would have slept much longer (she was out cold), but we had to take her in to get her bloodwork for the EPI-743 study. This time they also needed a urine specimen, which we collected at home ahead of time (we just happened to have a urine bag and cup laying around). We have to take her all the way to the hospital for these blood draws because they want a VBG (venous blood gas) and no one does those except for the hospital. It's a real pain in the butt. We have to drive into Houston, valet park ($15 flat rate) and then go through admissions which always requires a lot of waiting...just to go to the outpatient lab. If that wasn't enough, the outpatient lab has been closed down ever since we started these draws, so we always get the run around about where we actually need to go. The last time they sent us to the Liver Center. This time they wanted to send us to the ER, but I told them there was no way I was taking my immune compromised child to the ER! Instead they had someone come meet us at the Liver Center (apparently their blood person had already left for the day), but this lady immediately told me that she was not able to draw a VBG (apparently you have to be a RN or a doctor to do this)! So we made several calls and finally they decided that she could draw it in a tube and then rush it over to the lab to be analyzed (we'll see if we actually get results from this). Reagan was such a good girl through it all. The lady didn't even have a small enough butterfly needle and had to really dig around in Reagan's arm for a while before finally finding the vein (I was having to hold her arm and found myself getting a little light headed during this part). She took a lot of blood and Reagan never even made a peep. She's such a trouper! Boy do we love this girl!!!