NIH days 2 and 3

I guess it is officially days 1 and 2. We got up and around yesterday morning, Monday, and Max and I went to the first appointment. It was just 7:00am Colorado time, so Max was having a hard time waking up. We met up with the metabolic team and they got Max's extensive history. My brain was jelly after that! I had to recount every little thing since he was born. It was interesting to say the least! They also looked him over from top to bottom, looking at every single little part of him taking notes the whole time. They even smelled him! (One of his medicines makes him have a pretty fishy smell, and the doctor was noting that to the students and having them smell of him so they know the smell.)

Over and over they asked about his current treatment, they were surprised at the levels of medicines he was on. They don't normally see kids at that high of doses. And Max is on one medicine that they haven't seen on anyone else. Our doctors in Denver sure are renegades it seems! ;)

Our second appointment (almost 4 hours later!) was with opthamology. They were running a bit behind so it was later than we were supposed to get in. The doctor dilated Max's eyes and took some history as well. After an hour of dilation, he looked in Max's eyes and said they looked to be in good health. (Max's condition can cause his retinas to deteriorate, he didn't see a lot of that at all, which is a great thing!) He also wrote me a prescription to get him glasses because he is quite far sighted.

We finally left the clinics around 5:00pm. They sent us back to the inn with a baggy to collect urine in over-night. I really should get paid for all of these nursing skills I possess these days! When we got back to the Inn, Max was exhausted...I was exhausted! I laid him down and he went right to sleep, I decided to lay down by him, and for the first time in ages I took a nap!

Steve had work he had to be at all day, so he was on his way back from the city while we took our little snooze! He got us some food and we ate dinner out in the dining area here at the Inn, then headed right back to bed! What a day!!!

This morning we were all a little more rested, and I was not as overwhelmed knowing that Steve would be with me for the appointments. We got around and to the first appointment, with neuro-testing to do a developmental assessment of Max. He was once again sound asleep for the interviewing process, so the doctor just asked us the questions. I was glad that she was basing it on the interview, and not solely on how Max was acting! I think that report would have been that he just sleeps and snores during interviews, and only wakes when we say the word Elmo or Opera!

After that appointment we went to the Pediatric Clinic to pass off the urine sample and take down the measurements for me and Steve, since I guess we're in this study too! Next we went to the blood lab to get samples from each of us. Steve and I only had to give 5 vials each...Max was twice that. I wonder what they are going to do with all that blood!? Curious and Curiouser!


We stopped to have lunch, and then Steve had to go on to do some more work. We then went on to radiology for an ultrasound of Max's gizzards and pictures of said gizzards. It tickled him I think because he kept squirming all around and making it very difficult for a clear picture. we finally got all that done and went on for the hand X-ray to measure bone growth.

Now we are back at the Inn and done for the day. I think I am going to get some phone calls made, and play with the super star for a while. We'll be keeping you updated, so check back tomorrow for more in the life of Max!