Another day down (almost)

I forgot to mention yesterday that we broke our trip to Duke up by going through Spartanburg and staying with my sister over the weekend. My mom and brother also came up from Charleston to Spartanburg for the weekend as well. We enjoyed seeing family and a couple of friends, as well as some really good food while we were there. This was our first trip anywhere besides Duke in over a year and it was definitely great to have some help with Riley.

After a long night and Riley getting up at 4am for the day, we are ready for this day to be over. We had our first appointment with the endocrinologist and got our first good news in awhile. Riley has grown 2 inches since January, and also gained the weight he needed to back. He had lost all the way down to 39 lbs. back in January and is now 47 lbs. We were glad to hear both, especially since Riley didn't grow at all from last March to this January.

Next, we went down for our next appointment, an echo cardiogram. This didn't go well at all, and when I told the technician he is going to be sedated tomorrow for his MRI and EEG, she immediately decided to wait and come do the echo while he is sedated for these other two tests. Next, we headed back upstairs to have blood drawn for Riley's lab work. Again, Riley was not very happy about this, but we got it over pretty quickly, and with no pain since Riley has a port. Once again, we headed back downstairs for a chest x-ray. Just recently, Riley has started something new when he is picked up. If he has been in his chair or wheelchair for a little while and wants to be held, it doesn't matter who picks him up, he immediately says, "I love you, give me a kiss." Only one person can go in for X-rays, so I waited outside and knew Joel had finally picked Riley up when I heard him say this.

Next, we headed to Duke South, a different area of the hospital for an EMG, or nerve conduction test. Riley had this test last March and it didn't bother him because I was able to explain the test to him because I've had it done several times. I told him it didn't hurt, it just feels weird, and he did fine. He had it done again back in October and didn't do well at all. Today, we were pleasantly surprised at how well he did, especially since we had to hold him down during the test. So we ended on a good note since that was the last test of the day.

We were all three very hungry and very tired by this point, so we headed back to the area we are staying for a late lunch. We were so happy that one of our favorite nurses, Connie, was able to come by and see us for a little while. We are still hoping to see a couple more of our favorites over the next couple of days.

Riley has started expressing himself in a new way that we can't help but think is cute even though I know it must be so frustrating for him. When he gets very angry or frustrated, whether it is just with us or at something he is having to have done, he just can't find the words to express himself, so, he just starts screaming very angrily whatever he can think of. Today, it was "Monsters vs. Aliens!" several times, as well as, "Ethan!", and "I'm sorry."

There was lots of anger and frustration today, but when we got back to our room late this afternoon, he was surprisingly happy. Joel and I napped with him in between us, but I don't think he ever slept. Every time I would wake up and look at him, he was smiling and whispering to himself. Hopefully he will wake up happy after a full night's sleep.