?Low tone with Failure to thrive

Any one out there who has become aware of this blog becuase of Sophia and her failure to thrive: Have you had a diagnosis of Low tone for a reason for the FTT? We had an occupational therapist come out two weeks ago that questioned whether we are having such a difficult time feeding her because of some type of low tone in her mouth/tongue. She gave me several ideas to try, and then came back today with a whole new bag of ideas and tricks to try. Now she is wondering if there is a strenght issue, whether or not her tongue, jaw etc is strong enough to chew the food and move it side to side and swallow it normally. I find all of this truly interesting because no one has really questioned anything like this before, and everyone has kind of thrown their hands up in the air and been like we just don't know... So anyways after she watched Sophia again today she felt that it probably isn't a low tone issue, as she is not drooling alot nor does she have her mouth hanging open or anything similiar
So now she is recommending some type of swallow eval or something along that line. Or at least to have someone come and watch her chew and swallow that specializes in that type of thing to determine whether it is a tone issue or a strength issue. Oh joy! More doctors and testing...
In other news we started the albuterol for Sam yesterday and have been having to give it to him every four hours. Not sure why seeing how he is supposedly not allergic to anything that is blossoming right now but we shall see. He has been very quiet and mellow these last few days, I feel like all of this bronchospasm is sapping his energy. We aren't to our "bad week" yet, and I can only imagine how that will be next week. So prayerfully things will get better and not worse. We don't go back to immunology for another two weeks. Scared to know what his IgG levels are, but also scared not to know. I wonder when this gets easier?