Late posting this but all went well with Jennifer’s surgery. She had her laryngeal cleft repair done at Children’s Hospital Boston on July 14th. It couldn’t have gone better. She spent two nights in the hospital there. No complications or setbacks. Thank the Lord for that!! For the entire medical story click on her caringbridge site link in the sidebar.
She has already had her post-op appointments too. We are to start weaning her thickness of her fluids around the beginning of August. Then her next swallow study will be in early October. Wish us luck with the weaning!
The other bit of news that we have received is that she is possibly fructose intolerant. She had been having loose stools, bloating and gas for awhile and went for a fructose breath test which was abnormal. They aren’t sure if the thickener she has to have in all fluids to not aspirate them played any role in the abnormal results though. For now we treat her as if she is fructose intolerant and keep sugar out of her diet as much as possible and then the GI doc wants to repeat the test in a few months once she no longer needs thickened fluids.
My poor girl. Now add sugar to the things we have to limit along with no milk and soy. Uggh!!! Though at least with the sugar it is a limit rather than a total elimination like the milk and soy. She seems to at least have it pretty mild as taking all juice out of her diet seems to have helped a ton.
I think that’s the updates for now. I’ll try and update more often.
