Another Video Swallow Study Tomorrow Morning

Tomorrow Jordan will go in for another video swallow study.  She has not had one for over a year and has had no therapy for almost as long.  We don't know what to expect.  Since her severe aspiration in December, she has not taken ANYTHING by mouth.  Nothing.  For a long time she was getting small amounts of yogurt, but that all came to an abrupt end when she started coughing and telling us that her swallow hurt. We are hoping that Jordan is willing to accept foods and will be much more cooperative and sit still better than in the past.  

This is the first step in getting Jordan's doc on board to send her to Cleveland Clinic for an evaluation and possible therapy.  Since I never updated anything since her appt, basically the doc wants to run a few tests and see where she is and determine if she is a good candidate for the v-stim therapy we want to try.  After the swallow study, she wants to have a FEEST study done.  This is a more complex swallow study and I am yet undetermined how I think she will tolerate it.  I am not sure what the doc will want to do after that, but we see her in August again.

Another interesting thing that has happened is that we switched insurance carriers.  We are now with Blue Cross Blue Shield Michigan.  Because Derrick's employer is actually self-insured and only uses the insurance company to process claims, the HR people are very aware of Jordan's needs and the insurance challenges we have faced over the past several years.  Anyhow, recently I received a call from a Case Manager, an RN who will assist and guide me through figuring out if there is more that we should be doing for Jordan and ensuring that we are using our benefits to their fullest.  This has been a great encouragement to me that the insurance company isn't against me...although, I have yet to file Jordan's speech therapy claims.....

Well, I was talking with the case manager about the staining on Jordan's teeth.  (Her teeth are covered with an ugly brown/black stain, starting on the gums and working across the entire surface).  We have been unable to keep them clean through regular brushing and yet, they come clean every 6 months when the dentist cleans them (for the most part).  Well, the case manager felt that something was definitely going on that needed to be addressed and suggested we see a GI doc.  I had asked Dr. Burdo-Hartman about this and she said she didn't feel it was necessary for Jordan to see a GI because she didn't have GI issues.  When I told this to the case manager, she told me to call her primary doc and get a referral from him because it didn't need to be a specialist that referred her.  I had never thought of that.  I am my child's advocate, yet I had not fought for her.  Well, hopefully soon I will remember to call her doc to request the referral...but that's another story...