Tuesday, June 10, 2008

Game plan

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".

5 comments:

teresa said...

I would love to see her shoes. I am glad they can make the adjustments to her diet. I continue to pray that the seizures will stop. I will lift up a special prayer at the Vatican on Friday. Teresa

Stacey said...

Sounds like there might be a little light there!! Glad to hear that her tests showed something that made some sense as to why her seizures are still at the pace where they are.

I am sure that once the diet tweak takes hold, you will have a lot less seizures and a lot more silly, smiling, happy baby!! :)

Jennifer said...

I'm thinking about you constantly and praying for miracles every day. I love you. xoxo.

Heather said...

Reagan has the most beautiful blue eyes! The game plan sounds great and we are all praying that this will be Reagans miracle!

DeMar said...

Wow! Brooke gets her AFO's next week. We got our stander on Monday. Purple butterflies, huh?! We'll let you know what Brooke ends up with. If we can find ladybugs, we'll probalby go for those! The blood draw part is heart wrenching! The pits! I get that. Take care and I'll be praying that the diet change makes a difference for Reagan and you and your husband! Kadie DeMar (Brooke's Mom)