swallow study

well we had kinsley's swallow study done the other day. i have to say it was very cool to see. she was in a chair next to an x-ray chair and she drank/ate barium which they can do a moving x-ray with. i had to go to a viewing room but Brandon was lucky enough to be able to come with us so he got to stay with kinsley. so as she ate and drank we watched the liquid or food go in her mouth and down her throat. this test only does the what not the why...so we did find out that she is aspirating (liquid going down to the lungs not stomach). they gave her 3 different thicknesses of liquid, she aspirated the thin and medium, but not the thick, so we are not thickening all her liquids with a special gel to keep her from aspirating it. with the food she did not aspirate but they said that doesn't mean she doesn't do it at other times just not that time. with how much she aspirated the liquid they think she may be doing it with food also at times. they also said she has a delayed swallow which is leaving her airway open to long, causing this problem. they called it silent aspiration because she did not cough or choke during the test at all, but the x-ray showed the liquid going to the lungs. which means for all the times she is choking and coughing there are who knows how many times she is aspirating that we don;t even now about. not good! they also said we have been very lucky that she has not had pneumonia, or chest infection yet.

so where do we go from here? good question. we got referred to the speech and ot services so they can observe and see what they can do. it was also recommended to see a neurologist and/or go to the developmental delay clinic. our doctor wants to try the speech and ot services first and see what they say before going further, but i am not to sure about that. he said since we saw the phys med doctor and he cleared kinsley he isn't sure the others can help. but i did not like that doctor and was very unhappy with how he watched kinsley walk across the room for 5 min and said she was fine and did not account for any previous delays or other issues we were having at the time. he never even spoke about the choking or spitting up, saying they weren't is area. well if they are do to muscles weakness which we now know the swallowing is then it is his area. so... i don;t really know what i want to do next, i think the SLP and OT services could be helpful but i am wondering if we need to see a specialized doctor to figure out why this is happening. i don;t know the long term effect but pneumonia is no good. i would like someone to put all the pieces together, as i have said a thousand times. we are still going to the GI in march but they doc we saw for the swallow study thinks the two issues are unrelated, meaning the puking isn't due to the aspiration, although they could both be from muscle weakness.

if anyone has had experience here or knows someone who has any advice would be helpful. kinsley is obviously mild but bad enough to have concerns. thanks!