Saturday, May 19, 2012

Gastrointestinal (GI) Doctor

Oaklynn has been having a hard time eating and it keeps getting worse. It takes us at least 45 minutes to get through a meal with her. A couple other Rett mom's had told me that their daughters got feeding tubes because it started taking hours to get through meals because their daughters had a hard time eating. They believed that the girls wanted to eat and were hungry but just didn't have the energy and strength to eat (because they are always grinding their teeth and throwing their arms and body around that it is exhausting for them). They got feeding tubes for their daughters but they are still able to eat with their mouth, they just use the feeding tube to make sure they are getting all the nutrition they need.
I want to see a GI doctor to get an opinion. Oaklynn just sits with food in her mouth and doesn't chew and sometimes just gives up and spits it out. We assumed she was just starting to be a picky eater but now we realize that it may be related to Rett syndrome. I will keep you updated as I find out more.


Stephanie Moore said...

Just realized I haven't been on the blog for awhile, it was good catching up. keep us posted on how the results are with the Dr's and geneticist. And I didn't realize Kynslee's tests came back, so happy for you guys! can't wait to see those sweet girls soon!

Jenn S. said...

Hi Whitney, I just got caught up on all that's going on with Oaklynn and our girls seem to be on the same schedule pretty much. On Monday we were in Grand Rapids At the children's hospital to see the neurologist and have Brennas first EEG. She did great thanks to mickey mouse on our phones. :) They want us to now do an EKG. I am glad to hear that Oaklynns went well. We ended up going to see a gastrointestinal doctor where they did a swallow study. I would love to tell you about it If you want. I don't want to take up all of your comment space. :) I will message you on facebook. Talk to you soon!