I haven't been posting much lately. Things around here have been a bit difficult. But I think I am ready to talk a bit about it.
Tuesday Grace was diagnosed with Mega Esophagus. This is a condition where the muscles in the esophagus essentially stop working and it gets all stretched out. Basically she has very little ability to swallow. In adult onset, its often due to another condition called Myasthenia Gravis. We are still waiting on the lab test for this, but her symptoms are very likely.
What this means for us and Grace is that we now have to be much more involved in her eating process. Since she can't swallow, all her food has to sort of flow down her throat. We now have to feed her in a totally vertical position and then continue to hold her up for about a half hour for the food to get all the way down. Otherwise she coughs it back up which can lead to aspiration pneumonia, which the radiologist thinks she was already developing. And she needs 4-5 small meals a day. She can't drink any water herself either, and must get her fluids from her foods.
Its been a tough week absorbing all this and starting to change the way we do things here. We are going to build her a baily chair which is used for feeding, but we havent been able to do that yet. None of us are woodworkers, nor do we have the proper tools, but I am hoping we can figure this out. I think it will make her life and ours a little easier.
I am going to try to not let this condition take over the blog, but this is a huge part of our lives now, so I will apologise in advance.