Stuff has happened in the last week. :) However, we have been busy so we haven't had time to update except for a couple of comments on Facebook. Both girls had clinic appointments in Cincinnati. This was Nika's first visit with a new geneticist since ours left Vanderbilt.

Nika's appointment went mostly well but I was unprepared because I left Nika's medical book at home. I couldn't remember one of Nika's medications because I can never remember that medication for some reason (which is why I carry a book with me!). I think that my brain is full with all the other medication names and amounts that I don't have room for just one more. So anyway, they ended up calling the nurse who gave me a dirty look when I got one of Nika's other medication doses wrong. There were a couple of other little things but it did generally go well. I think we will work well with this new doctor. It helps that he is from Arkansas, right outside of Memphis, so he might as well be from TN. :)

Pearl Ann's ultrasound showed that her liver is close to normal! That is a great big improvement compared to the last one. It looked like the PSC had gone into her common bile duct. Maybe it will again, but it isn't there now!

So we went to Hannibal, MO and visited Mark Twain's home and went to the cave. We were listening to the unabridged book on the way and had just heard the part about Tom and Becky getting lost in the cave when we went in. It was wonderful timing. Eliza was super excited about it. Interestingly, I don't think the guide has ever read the book. She got several things wrong and said that she says what the owners tell her to say. Huh? We didn't badger after we realized that she really didn't know what she was talking about and that she wasn't trying to get us to catch her at it.

We got back to Dave and Betty's the next day and hung out. The next morning Nika woke up vomiting. Ugh. So we got to spend another night at Children's Mercy in Kansas City. It is a wonderful hospital but ... it is a hospital and things almost always go wrong. This time it had to do with Nika's diet. It wasn't that big of a deal but it was stressful for me. The next day was Pearl Ann's 7th birthday. We had to stay in for half the day but left in time to celebrate with her by going to Build-A-Bear. I'll post pictures when I download them. All the kids got a bear (in lieu of a party). We realized Nika didn't have clothes when we got out of the hospital so we had to take her in pajamas and without shoes and rush into a store and buy her some new clothes. She was really happy but we got some looks and comments. Oh well, she looked sharp after we left Children's Place. :)

Then we got to hang out with Paul's brother, Karl, and his family. Connor, our nephew, was old enough for the first time to play with Nika. At first Nika called him "that boy" but soon learned his name and was asking to play with her cousin today.

This experience has confirmed to us that traveling too far from home probably isn't a good idea. Leaving our routine and going to lots of public places seems to get Nika sick and quickly. We nearly had to hospitalize her at Disney last October when we went on Pearl Ann's Make-A-Wish trip. Even Pearl Ann didn't do well on that trip. I guess I am just realizing that we really are that fragile. Freaky momma kind of fragile. Sigh. Anyone who knows me knows I don't like this.