Tuesday, June 10, 2008
I spoke with the nurse practitioner this morning about the lab results and Reagan's levels are sky high. They were expecting her to have a high level of beta-hydroxybutyrate somewhere around 6 and she's at 8.3! This is both good and bad. The good news is that her levels are high as expected and by lowering them (by changing the ratio of the diet), we may potentially see a change in her seizure pattern. The bad news is the levels are so high they put her at risk for metabolic acidosis so we're still waiting on some additional lab results that will give us more insight into whether or not that's a real concern. So the plan now is to change her ratio from 4:1 to 3:1. Using the Ketocal this is a fairly simple change- we just have to add some sugar to the formula. Sounds like a win win for everyone involved. The game plan is to give it a week at this new ratio and see how she does. We're hoping that this change will do the trick and we'll begin to see a decrease in her seizures. Please keep this in your prayers. This afternoon we took Reagan in to get cast for her AFOs (braces to help keep her feet flat instead of pointed). There was a lot of stretching involved and she didn't like it. Luckily, once they got her all wrapped up it hardened within minutes. We picked the purple butterfly AFOs. I would have preferred something in pink (she wears more pink than purple), but they didn't have anything nearly as cute in pink. They should be ready in 2 weeks, so we'll have to take her back in then for a "fitting".