(that X-ray is not of Alice)

The day after Isabelle had her arthrogram, Alice had her swallow study.  They did both the modified swallow study and lower GI test so we could see how Alice’s mouth, throat and esophagus behaved while eating, and what her stomach and intestine do once the food makes its way down.  Al and I decided that rather than cart both kids to both appointments, leaving one to have to wait in the waiting room, I would go with Iz and he would take Alice.  I have to admit that as much as I would have liked to have been there to hold Alice’s hand, I am so glad I wasn’t there.  For the lower GI test, Alice had to drink straight barium on.her.back.  For whatever reason, they couldn’t mix the barium with her bottle.  They didn’t explain why she needed to be flat on her back, but Al’s best guess was something to do with the way the X-ray was taken.  It was a very unpleasant experience for Alice… lots of coughing, gagging, and crying (screaming).  Thankfully, she did not aspirate, which she most certainly would have during this episode if she was at risk for aspiration.  The modified swallow study was much less invasive, and she was able to sit in a TumbleForms feeder sit and eat pureed food mixed with barium. 

There was a lot of medical speak that came out of both of these exams, but what we took away from it is that Alice’s swallow pattern is normal and the actual anatomy of her mouth and throat is normal.  Her intestine also functioned normally, but they couldn’t gauge how well her stomach emptied because she wasn’t able to ingest enough of the barium.  Still, they were able to tell that food was traveling out of her stomach and into her intestine.  In the end, these results are very good.  They show that there isn’t any obstruction or abnormality or any other foreign body hindering her eating.  And the fact that her swallow pattern is normal is very good news because that is a neurological function (specifically, the pharyngeal phase of swallowing.  This Wiki article is an interesting resource). 

So what is keeping Alice from being able to eat?  The speech pathologist said that Alice’s problems stem more from her poor trunk and neck control than a specific difficulty in swallowing.  She said that the mouth follows the body in development as far as control and function, and that Alice’s swallow pattern is consistent with a five-month-old.  She suckles rather than forms an actual clump of food with the tongue and cheeks to swallow like we do, and her chew pattern is strictly up-and-down versus rotational.  The SP recommended that rigorous physical therapy to strengthen her trunk and neck would be more helpful than something specifically targeted to swallowing like VitalStim.  In her opinion, she said Alice would not benefit from VitalStim because it is more focused on the pharyngeal phase of swallowing, which does not seem to be a problem for Alice (very good finding!).  She agreed that positioning will help make feeding easier, but it is really a problem of a weak core to support more advanced eating. 

Hearing all of these findings gives me a great sense of relief.  It explains why we have hit a plateau in feeding therapy and proves that Alice simply is not ready for chunkier table food.  Sometimes you have to hear the same thing over and over again from different people for it to sink in.  I think of all the times I offered Alice more advanced food (mashed avocado, scrambled eggs, soft oatmeal) and I think of how hard she tried to manage it and how frustrated I would get when she just refused.  I wouldn’t say that I feel guilty for trying to give her more age appropriate food because I only wanted to help Alice progress to the next phase of eating.  I guess I feel a little regretful that I exerted so much frustration and stress when I should have just accepted that Alice cannot eat like the average child right now.  I think I felt that, like therapy, if we just kept pushing and trying new things, her mouth would become more used to solids.  I will say that since the test, I have let go of this need to push Alice so much during feeding.  It sounds kind of depressing, but I think of when we first started feeding Isabelle solid food and use that as a benchmark for the consistency of what I offer Alice now.  Hopefully feeding time will become more enjoyable for us now, and a lot less stressful.