Another New Discovery

Yesterday, Emmalin and I went back to the St. Louis Children’s Hospital for 2 appointments. One was with her neurologist and the other was to have a swallow study done. Emmalin has never had a swallow study done and I was glad that we were finally going to be getting a base line in this area. Although I have known for a long time that Emmalin has very weak muscles within her neck and mouth, I didn’t realize how bad it was until yesterday when I saw Emmalin’s video x-ray. It showed 3 different times that Emmalin aspirated  This isn’t good for a lot of reasons!! And even though the test definitely showed that it only started getting bad the longer the test went on (as her muscles got more fatigued), this test makes it VERY clear that aspiration is no longer a possibility but a reality. I am grateful that it only seems to be really bad when her muscles are very fatigued (and not all the time). And looking on the bright side, it could get a little better if/as she starts to gain her strength back in her core, neck and mouth. For now, we just are really going to have to start watching her when she becomes sick and other times her body becomes physically exhausted (like when she throws up). It is when her body gets tired that she will be at the highest risk for aspiration to occur!!!


I would be lying if I said that I wasn’t scared, sad, disappointed, and every other emotion in the book. But I am grateful that we now have a base line!! I know that although any type of aspiration is not good, but I know in Emmalin’s case it could be A LOT worse!! We will now be meeting with Emmalin’s pulmonologist to see what he thinks about the test and to get a new “game plan” together on how to go about things from here.

It is SO exhausting mentally, physically, and emotionally to have to sit back and watch your child have to go through all of these TERRIBLE THINGS!! Why some children have to suffer in SO many different ways is something I don’t think I will ever understand.

One thing I do understand is that God is with us and He has it ALL under control. Although it is A LOT easier some times to remember this than others, I know that God will lead the way!