Oral Therapy

Last Tuesday, 1/27, Jordan went in for her first oral therapy appointment at Mary Free Bed. We met with Ellen and nurse Jane and we chatted for a few minutes about her progress over the past 5 months. They weighed and measured her - 19 lbs 5 oz and 29.5 inches - a gain of 12 oz since 1/3, but still below the 3rd%.

We discussed her swallow study and she said the biggest concern was the silent aspiration - food going into her lungs without her coughing at all. She was very surprised by the results and was concerned that she has been rattly and coughing since then. Ellen insisted that she perform the next swallow study because she may have approached it differently because of her knowledge and experiences with Jordan. She recommend we perform another one in 5-6 months.

Ellen showed me several oral techniques to use to stimulate her mouth and to soften the tissue in her cheeks and lips. She gave me several sheets that described and showed pictures of the them to remind myself later. Because I have worked with Ellen before, she felt comfortable asking me to do these at home 3 times a day and discharging me from therapy. She didn't want me to use up my insurance visits if we can get Jordan eating in another 6 months or so.

Since then I have attempted at least 2-3 times a day to work with Jordan but she refuses to allow me to stick my hands anywhere near her mouth or face. If I convince her to let me get my finger in her mouth, she turns her head away or tries to bite me (successfully several times)!! The external massages I am only able to do for a brief time if she has a pacifier in her mouth.

I am getting frustrated because I feel like I am unable to do anything to progress her forward toward eating again. I am hopeful that if I continue to work with her without pushing too hard, eventually she will let me work with her. Otherwise, we may end up having to return to Mary Free Bed for therapy before long.