Wednesday, August 15, 2007

Sean Update

Sorry that took so long! I do have an update about Sean. His appointments on the 1st went very well, and both the nephrologist and the urologist said we don't have to go back for several months!

Sean's nephrologist was in general very happy with Sean's progress. They always send a copy of the clinical notes to me and to Sean's pediatrician and I noticed that he said something about Sean being "challenging" and not being able to look at his eyes very well "due to cooperativity" which kind of made me chuckle. I thought he did great! But he's still Sean. :)

Anyway, he was pretty happy with everything and the only thing they called back about was one of the labs. Remember how Sean was on a lower dose of some of his drugs for a while because of the Epstein-Barr virus (mono) and then he went back up again last year? Well apparently he's testing positive for that again so we need to get some more bloodwork in a few weeks and unfortunately his doctor wants us to drive all the way to the University to get it! That'll be super fun. Other than that, though, he said to get regular labs in 4 months and come back in 8, which is awesome.

The test we had to do went pretty well, all things considering. It still involved a catheter and there were 3 women doing the test, which is kind of embarrassing for an 8-year-old boy, but Sean did very well. He always looks forward to seeing Donna, the Child-Life lady, and she knew about the procedure ahead of time and she cleared her schedule to make sure she could come help out. She encouraged him to blow bubbles to distract himself and to help with the pain and it worked pretty well. (I, on the other hand, was so stressed out by the whole thing I ended up getting really sick the day after we got back! I'm glad we don't have to do that kind of stuff very often.)

The test itself went well and the urologist was pretty pleased with the results. He didn't see too much pressure on the bladder (like when urine gets pushed back into the kidneys) and he thought everything was appropriate, although he still thinks the bladder itself is too small. He said to stay on the smaller dose of Ditropan and come back in 6 months, which is kind of good and bad. I'm glad there's nothing going on with Sean's bladder, but on the other hand I'm extremely frustrated by the lack of progress on the potty-training. I would really like to get that more under control!

Anyway, that's the most recent information. I'm not sure yet when we'll be going to get that bloodwork but I'm pretty sure we'll just drive there and back so Sean doesn't miss too much school.

Have a great week!

Laurie