Wednesday, August 27, 2014
Reagan actually had a pretty good day today! After her day yesterday, we didn't know what to expect, but we were pleasantly surprised! She slept well and woke up this morning feeling much improved! She did well with speech and then we helped her have a poo (she was really backed up again) and then we did an early bath! She was all nice and clean and ready for her afternoon dental appt (although a little hiccuppy). Her brother, on the other hand, decided to throw us for a loop! He had been a little difficult this morning, fussing, not wanting to eat much, and even acting like he was going to throw up at one point! Then I noticed a little hive in his diaper area, the next thing I knew, he had hives popping up all over (on his legs, face, stomach, feet, back, etc)! So as I was trying to figure out a way to get him to take benedryl (I had to find the right dilution in juice that he will still drink), he started spiking a fever! He was getting hotter and more miserable by the minute! He wouldn't touch the juice with Motrin in it, but did eventually drink his whole dose of Benedryl. Mike took off work and came home to take him to the doctor. He was SO pathetic! The doctor really thought it was strep (because he has the nasty tonsils covered in pus again), but the strep test was negative, so they just think it's some sort of virus. Now I guess I know why he was acting gaggy...his throat hurts! While he and Daddy were at the pediatrician's office...me, Reagan, and her nurse went to her dental appt. Her teeth look good, but she is long overdue for a cleaning/x-rays (it's been years), however, her dentist doesn't want to put her under anesthesia just for that. So we'll wait and see if anything else comes up that we can do at the same time. Meanwhile, we'll just plan to go back in 6months for another checkup. After her dentist appt, we headed over to the hospital for the care conference with all of her doctors (palliative care, neuro, GI, and metabolics/genetics). The neuro was the first there so we spoke a lot about the ketogenic diet. I forgot everything that goes along with that...switching all of her liquid meds over to pills (so there is no added sugar/carbs)...it's going to be a pain. He agrees it's worth a shot. We also talked about possibly having to rotate her formulas, every four months or so, to keep her in that "honeymoon" phase. For instance, we just switched her formula and she's already doing much better than she was before. So the plan with that is to hang tight on this formula for now, begin increasing her rate (so she doesn't lose any more weight), and then meet with the ketogenic diet people on Friday and come up with an exact game plan so we have something to switch over to if we see any downward trend. She wouldn't be on a typical ratio like for seizures (4:1 or 3:1), she'd be closer to 1:1 or 2:1, so it's not nearly as difficult. So we'll see. We have a plan for now. The metabolic dr also wants to get a urine sample on a day we smell the "bad day smell" and look for urine organic acids. So that's our plan. Reagan was great during the meeting and just hung out with her nurse in the hospital's library! We did get stuck in 5 oclock traffic on our way home, but she was great. Ryan seemed fine by the time we got home and he went down without a fight tonight (but that might have been because of the 10min nap he had this afternoon). Reagan and I spent the night quarantined to her therapy room. She dozed off once fairly early, but woke back up when I laid her down, but fell back asleep in my arms after clonidine. Such a sweet girl. Hoping both kiddos get some sleep tonight!