Friday, August 29, 2014
Reagan slept well again last night, but her brother was up again playing in the wee hours of the morning! She's had another good day today for the most part. She had a big giant messy poo right before we had to leave this morning, requiring a quick impromptu bath. Then we were off to her ketogenic diet appt. I waited in the waiting room while Reagan and her nurse sat in the hallway for an hour...the office was insane...there was no way she could tolerate that chaos for that amount of time! Thankfully the hallway was only temporarily noisy (as people were coming and going from the office), so she tolerated that just fine. Once inside, they took her weight. She's still at 47.96lbs, which is higher than I would have guessed after being on the reduced calorie formula for three weeks. Then we met with the dietitian. She just went over a few basics that we already knew. One new thing is that the formula is now a liquid (instead of a powder), so that should make things a little easier. Reagan won't have to go in patient to get on the diet since it's such a low ratio. She will however have to get labs drawn at the beginning and on a fairly regular basis, but we're hoping we can do those at the same time as her Stanford labs. We discussed her total liquid in take and we may want to try to increase that a bit. She's bee at 1100mls for a while now and the dietician said that for her age/weight 1500mls is more appropriate. They try to stay on top of fluid levels with the diet because it can be constipating (great), but maybe by increasing her fluids, that will help her all around. The plan is still just to hold tight until we notice a downward trend with the current formula regimen and then we'll talk about initiating the diet. When we got home from our appt, Grandma was waiting for us (a day early)! Reagan was happy to see her, although she did get a bit excited. She was great for the rest of the day and then just as the nurse was about to leave, she started getting a little on edge. She had some tears and then another poo (3 total for the day) and that seemed to help her settle down a bit. Poor thing. Her tummy does give her troubles! I was afraid she wasn't going to loosen up enough to fall asleep, but Mike laid down with her and she eventually dozed off! Hoping she can stay asleep and wake up feeling much improved tomorrow!