Happenings around the Riffel Household

Well, my last post was in August, and we've been quite busy since then!
Susannah has done well with the DuoCal, which is carbs and fats in a powder that we mix with her formula. She has been gaining on a curve since we started that. She went back to the GI dr. in October and he put her on a liquid fat called Liquigen. So we added that as well. She seems to be gaining better and maybe even a tad more than the curve. He released us for 4-6 months. Right now we have an appointment in March, but if she's gained well at our cardiologist visit in Feb, I'm going to move it. Since her weight gain has improved, the Cardiologist said, in November, that we didn't have to go back for THREE months! This will be the longest we have ever gone between cardiologist appointments. Even before she was born, we were at the cardiologist at least every month, if not twice a month! While we were on Christmas vacation, I received a phone call I was waiting on, to consult with Dr. Bove, the heart surgeon from Michigan. On Jan 7, we meet with Dr. Bove and Dr. Scholl, the Dr. who did Susannah's first surgery. Hopefully, we will be able to get a more likely timetable, of when her big surgery will happen.




September brought Emily's and Josiah's birthdays. Aunt Deborah and her friend Miss Amy were able to come down and help celebrate a few days early. October was busy with school and getting things lined up for November and December. The beginning of Nov. the kids and I went to Dothan for the Peanut Festival. We packed in a bit more in this trip than we usually do. We went to the Army Aviation Museum in Ft. Rucker and then we took the kids to the Marianna Caverns. It was fun and I think the kids enjoyed it. Of course, we also went to Luke's "Birthday Parade." The peanut parade always lands around Luke's birthday, and when he was little, he truly thought it was for his birthday! :) We also celebrated Luke's birthday while we were there. We celebrated Thanksgiving at the church with our church family. There were a little over 30 that showed up and a few came that wouldn't usually go to church. A week after Thanksgiving, Leigh and I drove to Dothan, dropped the kids off, and went up to Tennessee to the Marriage and Family Conference at the Bill Rice Ranch. Celebrated Timothy's birthday Saturday, before coming home on Sunday. We then went back to Dothan for Christmas two weeks later!! Our plan was to stay in Dothan a few days and then go to Atlanta and spend a couple days there. Well, all of the kids got sick that week at different times, so the plans changed to where Leigh, Luke, and Emily went up and spent the night and afternoon and came back to Dothan before we headed home. Overall we had a lovely time and made some entertaining memories!

This weeks visit

The GI Dr. visit this week went well. All of her blood work and stool sample tests came back normal. He discontinued the Zantac. "Since it wasn't doing anything." Yay!! (I have a great dislike for giving medications that aren't necessary.) Since she won't drink the PediaSure, he prescribed some stuff called DuoCal. It's a calorie booster that is supposed to not change the taste or the texture. We started that yesterday. Hopefully it will do the trick, along with increasing her table food. We don't have to go back for 2 months!!!! YAY!!

Overdue update

Gastroenterologist visit went ok. He ordered blood work and a stool sample. He started Susannah on Zantac in case she has hidden reflux that might be making her not want to eat very much. Said it would take two weeks to start working and maybe act as an appetite stimulant. He also prescribed PediaSure 1.5, which is a prescription PediaSure that has more calories than what you buy on the shelf. After three days of giving her both, she decreased her eating, so I got permission to stop the Zantac. She still refused to eat, so I quit the PediaSure, got her on milk and then back to her regular formula. After she started eating well for several days I started the Zantac back and she's been on it three weeks now and has shown no signs of an increased appetite, so when we go back I'm going to ask to stop it altogether. She has never shown any signs whatsoever of reflux and her formula is a sensitive kind anyways, so I seriously doubt she has any problems in that area. Her appetite isn't bad, she just doesn't intake enough calories to compensate for her heart condition. She does eat and she eats fine. She has started to show more interest in what we are eating and is starting to prefer solids to milk, which is normal development around a year old. She WILL NOT take the Pediasure at all. We've tried mixing it to various degrees and she won't have anything to do with it! I'm hoping he says we don't have to come back. I don't feel like he really listened to us. We told him how much she drinks a day and he prescribed well over that amount and we also told him that she doesn't really like sweet stuff, and the PediaSure tastes like vanilla milkshake flavor (yes, I tasted it). We weren't really surprised that she quit drinking it, but we were hoping she would tolerate it just for the extra calories.


Cardiologist visit last week went well. He is so relieved that someone else is watching her weight. She gained 5 ounces from the previous visit and if she gains between now and Sept. we won't have to go back to him for 3-4 months. Nothing has changed on her Echo's since a few weeks after her surgery in Jan., so I think she's fairly stable for now. We're just waiting for her to grow more so the band can do its thing and we can have the Double Switch done. I asked about a time table and he talked like it would be 1-2 years based on her slow growth. Of course, there is no absolute way they can come up with a time frame, it's pure guess at this point. He asked if she tires out while playing, which would be a sign that she might need a pacemaker, but as far as I can tell she does fine. With her personality, I'm not sure I would be able to tell at this age if she's tired or not from playing or if she's just playing in a different way. The plan was to wait for the Double Switch and put a pacemaker in then, but since it keeps getting pushed further out, she might need it before her big surgery.


Praying that she'll continue to gain and grow, that she'll continue to be stable and that her tricuspid valve leakage won't get worse, and that I'll be able to clearly notice symptoms of her needing a pacemaker if/when it comes to that.


This is a link to a video of a little boy that has CCTGA and got the Double Switch surgery done. The first three minutes does an excellent job of explaining and diagramming what the surgery will be, and what a CCTGA heart looks like next to a normal heart.
http://www.youtube.com/watch?v=Ur05mwMn8FA&feature=youtu.be