After having major issues with our local pediatric gastroenterologist, we were finally granted insurance approval to see the "experts" at the Children's Center for Digestive Health Care in Atlanta, GA (http://www.ccdhc.org/). We drove nearly 4 hours to Dallas on Monday, December 6th to catch our flight for Atlanta, had Reide's appointment at 10am the following morning and then drove back to the airport to catch the flight back to Dallas then drive 6 hours (don't ask) home. Whew!
At CCDHC, we saw Dr. Glen Lewis who shares Brock's alma mater, University of Louisiana at Monroe. We had 14 (yes 14) Ped GI's to choose from, but after reviewing his profile (and seeing Border Collie's in the background), we decided to choose him. He had done a thorough review of Reide's medical history (reflux, oral aversion, mild failure to thrive, Baylor's Feeding Program, ng tube, g-tube, g-tube falling out, Nissen fundoplication, formula and volume intolerance) so we didn't have to spend too much time reviewing her past and instead got to focus on the current issues and future plans.
Dr. Lewis was pretty clear that he didn't agree with the surgeon doing a fundoplication on Reide, but since she'd adequately stretched the fundo already (proven by her ability to vomit with little effort, now) that he was satisfied that taking it out/reversing the fundo wasn't necessary. We had previously been told by our local GI that reversing a fundo was impossible. In the discussion of Reide's retching, I had told him my understanding that it was "the most painful thing" people who could verbalize pain report having ever felt. He corrected me and said, "I'd say painful is an understatement.....I think misery is more like it." Wow! If I didn't feel sorry for Reide before, there was no mistaking it now. Dr. Lewis approved of her current meds, approved of our plan to wean her off her feeding tube, approved of the blenderized diet I was doing for her and was most encouraged by the MRI of Reide's brain that was done previous to her g-tube surgery and said that her brain was normal and she is hitting and exceeding her developmental milestones. He added two appetite stimulants for during her wean and said we could contact him by phone or email during the wean for any questions that may come up. Nice guy, huh?
At first I felt disappointed that he didn't do anything. After a few minutes I thought to myself, "Hey, he thinks we're doing an excellent job. He's on-board with EVERYTHING we're doing and everything we plan to do." No problems with that!
Wow - sounds like you guys had a great appointment with the new doctor - yeah!!! Great doctors are sometimes hard to come bye. It's very exciting to hear that you are starting Reide's wean. I have checked into the Graz method and have been thinking about doing that for Allie. We aren't quite at that point yet because we are still digging deep to figure out if there is anything medically wrong causing her not to eat. I will be praying that Reide's wean goes smoothly and that it's a success. I'm sure it will be a lot of hard work for you and her but it will all be worth it in the end!!
ReplyDeleteGood luck and make sure to keep us updated on her progress.
Jodi Berndt
http://alliesabnormalappetite.blogspot.com/