Let me start by saying: 3 posts in one day?! I amaze even myself. Of course, I've accomplished absolutely nothing else today, but that's not the point. As long as my kids are dressed, well fed, having a fun afternoon, and unaware that their mother is a slug, I will glory in my blogging accomplishment (although it would be nice if someone would tell me what we're having for dinner).
The nephrologist called today and pretty much told me exactly what we expected to hear. Patience doesn't have any signs of kidney disease. Joshua does. Although as an added bonus to keep her from feeling left out, Patience does have a small kidney stone. Evidently it's consistent with malnutrition in her past. The doctor will take care of it, but he said there's no rush.
At this point, the calcification in Joshua's kidneys increases Dr. Tuchman's belief that we're dealing with ARPKD. The disease can also cause serious liver problems, but we're thankful that both boys show no signs of liver damage yet. I'll have to take Joshua for bloodwork later this week. If the blood shows normal kidney function, we won't have to go back to CHOP until January. If the results aren't good, we'll be headed back right away. The good news is that the longer they go without impaired kidney function and signs of liver damage, the better. Kids with severe ARPKD can show signs even before birth. The fact that Joshua is already 6 is a positive sign for him. There's never a guarantee that they won't eventually need a transplant, but each year that we can go without deterioration is exciting.
Because we had prepared ourselves for possible bad news, we're not totally overwhelmed by all this; however, you can never be completely prepared to learn that your child has a potentially life threatening disease. I'm feeling exhausted, and it's not just from a lack of sleep. Peter was already feeling stressed because he has a ton to do before he leaves town for a long weekend. We'd appreciate your prayers for all of us: for the kids' health, for us as we process the news and still try to do what needs to be done, and for Joshua as we give him the short story about why he needs to start carrying a water bottle to school.