Faith is continuing with the jaw distracters until early June so her jaw can solidify. In the meantime, we are beginning to work toward a fix for Faith's feeding issues. She has had a big problem with gas and spitting up on a regular basis. We have recently changed her food to a real food mix made for the g-tube feeds. That has certainly helped, but a recent appointment with the GI doc offered a different approach. He believes Faith's gas problem is really an air problem. He thinks she is swallowing large amounts of air. He suggested a different feeding pattern and wanted us to start by venting her as she lays down then feed her 5.5 ounces in about 10 minutes 5 times each day. So far this has produced very good results. She has not spit up much since we started doing this. She still has some bad gas issues, but not nearly as many. When she has spit up, we think many times it has been caused by mucus getting caught in her throat or just having too much mucus in her stomach. Yes...she still has quite a bit of mucus which we think might be in part to all the jaw changes. Jesi has her prone on some pillows on the floor. She looks quite cute in her pj's and keeps kicking her feet up behind her. Hopefully we can get some of the junk out of her before bed so she sleeps through the night. We have had a couple of nights in the past week when she slept through the night, and we are hoping for many more.
It is so amazing to see how much her more energetic and interactive Faith is. We found another Trisomy 18 child who has had a jaw distraction surgery. His name is Kayden and he had the surgery back in 2001. He is turning 10 next month and is doing very well. This makes me think even more that this surgery can make a dramatic difference because what I have read about Kayden, he was probably in a worse position than Faith was as an infant. I want to learn as much as I can about this and hopefully we can help others. Her is a link to a video of Kayden... http://www.youtube.com/watch?v=1x-vdUyULJM
No comments:
Post a Comment