(While knocking loudly on wood) - she has been doing well. Had to change all her specialist and her pediatrician since we moved but I am happy so far with the ones we've seen so far. She's up to 103 lbs. so I now have a lift for her (haven't tried it yet - still waiting on correct sling for it). Need to see new nephrologist so we can retest her urine to see how the medications have been working on her Hyperoxaluria. She hasn't had any stones lately (another knock on wood) so hopefully it is working.
As you may or may not know, I have been a Bon Jovi fan since high school - when they first came out - and now you should see/hear the positive impact that Bon Jovi's music has on Dakotah. I used to play classical music CDs for her at bedtime to stimulate her brain. Well, I decided about 2 years ago that I was going to start playing Bon Jovi CDs for her. OH MY GOSH - she immediately responded by making such loud noises ("singing" for her). I finally was able to capture it on video & posted to Youtube (http://youtu.be/cRnizUe5Ju8). Last night I fogort to turn it on and when I went back in her room to turn it on, I said, "Dakotah, I'll turn on your Jovi now" and she got the biggest smile on her face. I really do wonder how much of what I say she understands - I think more than I even remotely realize.
Before my time with her is gone, I took her to a Bon Jovi concert. It was such a moment. We tried so hard to meet the band but had no luck. They did drive past us in their van when they arrived to the venue, but didn't stop or come out. I'm praying desperately that I win a contest on Ellen Degeneres' website for 2 tix to the NJ show and most importantly a MEET AND GREET!!!! Oh gosh, this would be a wish come true! I would give anything to have a picture of Dakotah and the band!