Long but decent day at ACH

Some of you know that we had three appointments at Arkansas Children's yesterday for Micah. The first one was for Nephrology (kidney specialist) because he had an ultrasound about 6 weeks ago that revealed numerous tubers in one of his kidneys. We had been told when he was a baby that this would be a strong possibility as he got older. These growths (angiomyolipomas) usually occur in about 60 percent of kids with TS. They aren't problematic unless they grow or get to a point of hindering kidney function. So, what we were told yesterday is that though Micah has many of these tubers in his kidney, they are very small and are not threatening at all at this point. We will just have to monitor the situation and see the specialist again in a year.

The hardest parts of the day were Micah getting blood drawn (it took Wayne, myself and two other nurses restraining him and another to stick him with the needle). He just didn't know what was going on and the kid is so strong already at 6 years old! We had to hold him down for the ultrasound as well. After those appointments, he was fine.

We saw his neurologist in the afternoon and actually got in to see him a little early, which was a blessing! We really like Dr. Sharp and have seen him several times now. He explains things very well, he talks about options (medications) and asks what we want to do rather than saying "this is what we'll do". He is very good with Micah too and I think Micah is comfortable around him. He said in December it will be time to do a MRI of his brain to check on the tubers there and at that time a neuro-opthamologist will check for growths in his eyes and nerves around his eyes. We haven't done that since we lived in California.

All in all, it was a good day with a good report about the kidney. Also for all the waiting around and shuffling to different places, Micah did well. We had some sweet friends who kept Gabriel for the day and that was a HUGE help to not have to shuffle him around as well.