Friday, June 20, 2008

Outing

Reagan and I made the trek back to the hospital to check her beta-hydroxybutarate levels again. What made this trip special is that we did it alone. Yes...I know it sounds crazy but I have never in Reagan's almost 15months of life taken her to any doctors appointment unassisted. I was worried about it because Reagan usually hates riding in the car and gets herself all worked up and hysterical when in the car for any length of time (and then how would I manage to drag her and all her stuff around the hospital). She was so good today. She didn't start fussing until we got into the parking garage and I managed to get her out and into the stroller quickly before she escalated to crying. She was content in the stroller (which is totally new for her too) even as we waited an extended amount of time at the sign in desk just to get the stickers for her tubes of blood (and I got furious with the incompetent people working there). We park and check in at one building then have to walk across the bridge that connects to the hospital to get her blood taken. There we waited another 30min for our favorite nurse to get back from working on the floor only to find out they only needed a finger stick (this one nurse is the only one that can find Reagan's veins without poking her multiple times). She cried during the stick, but recovered quickly and went back into the stroller afterwards without a fight. I put her into her car seat happy and she fell asleep on the drive home. Painless. The trip anyway. Thank you God. Now... for the results. The dietitian called me this afternoon and told me that Reagan's beta-hydroxybutyrate levels are still high at 7.6 (down from 8.3 when she was on a 4:1 ratio). Levels of 5-6 are usually best for achieving seizure control (although some children require even lower). So we are going to lower the ratio of the diet even further...from 3:1 to 2.5:1. Before we added sugar to decrease the ratio...now we're going to add protein powder (beneprotein). We are hopeful that as we continue to decrease the ratio we're going to hit the magic number that is going to work for her. Please keep this in your prayers, because she really needs some relief from these seizures!! Reagan has been drinking the bottles so well lately. Sometimes she'll finish a 4oz bottle off in less than 10minutes...which is just a miracle for her. When we added the nighttime bottle she went from 20oz a day to 24oz, no problem!! I think we could probably make 5oz bottles and she'd drink them! It really is like night and day. At the beginning we didn't even know if they were going to allow us to start the diet because Reagan was such a poor eater and we would have to struggle to get every last ounce in her...and now she's putting them away no problem!! And she's sleeping better lately too! I don't know if it's the extra feeding or what? Last night she was sleeping so well, she didn't wake up at all, I had to force her to wake her just to feed her!!

2 comments:

Heather said...

I'll be praying for that magic number to come quickly for your dream girl! Sleeping well,eating well, traveling well.... come on seizure control,it's all that's missing! Proud of you for getting out there girl, even if it was only to the hospital.Wish we lived closer because I'd be dragging you guys out with us on our crazy antics. I am thinking of coming out for the Nutcracker though. Wouldn't that be fun?

Sophie's Story by Elaine said...

So glad to read that Reagan was a trooper for her appts. It makes a world of a difference. Sophie was on the diet for 6 months and nobody every mentioned beta-hydroxybutyrate levels to me. Sounds like you got a great dietitian. Hopefully, that magic number is right around the corner.