03/29/2011 20:28


Well today is the same, but different.  Cadence has been moved to a new room.  This one void of anything fun on the walls.  She can not do art, she can not interact in any of the hospitals games.  She can not watch any TV.  They are considering taking her books away.  Cadence is also, still not eating.  She refuses to conform.  It is hard to say why.  The doctors keep asking her and she keeps on answering that she just doesnt know.  I spoke today with the family therapist and got some thoughts out which I had problems conveying before.  Here is my frustration.  Kartini Clinic, albeit a phenominal resource for young adults struggling with food phobias or different types of anorexia, does not check for anything besides just that.  I really had no idea coming into this that is was like that.  Anything beyond these diseases, they do not have the resources to treat.  They have done zero allergy testing.  No screenings for different types of sensorial problems.  They have done some narrowing down for us and for that I am greatful, however had I known they would not be looking for these issues, I  would have had them done before we came out.  It has now been 5 days since I have seen my daughter.  She is still on the "behavior modification".  Unless she eats 3 meals in a row, I can not see her.  She is stubborn and I figured they knew that by now.  "A child will not starve themselves" has become one of my most hated phrases I hear people telling parents.  They sure as heck will and mine has.  You think just taking me out of the equation is going to change that?  The child almost killed herself!  The doctors here tell me she is a selective eater and there is nothing you can do to change that.  But they are only offering her the foods (she may like normally) in a way she doesnt like.  She doesnt like the bread (it is not white), she doesnt like the mac n cheese (it is not Kraft), she doesnt like the muffins (they are not blueberry) and so on and so forth.  So why is it that we are expecting her to accomplish something they told me minutes before she could not do?!  I also asked the therapist that if in a worst case scenario, Cadence was diagnosed with aspergers, would they be treating her in a different method.  Her answer?  "yes, of course".  Basically, the doctors are giving in.  Tomorrow I suspect they will tell me what the therapist told me this evening.  The team has met and decided to keep Cadence's NG tube in, however either on Friday or Monday they will be discharging her and sending her to the RMD House with me.  They changed their minds again.  Now they want her to go to the Day Treatment Unit at the clinic, but with the tube... which confuses me since patients are not allowed into the DTU with a tube.  She would be on a modified treatment.  I dont know what to make of this.  Why does it have to be my child to break their record. 100% of children in their program are turned around by the behavior modification.  Obviously, if Cadence has been cleared of the two broad diseases they treat, the methods they use will not work.  I am just very confused, hurt and wanting answers.  I am thankful for a few things.  1. My new friend Sherry.  2. Ruling out more things she is not sick with.  3. She continues to average putting on about a half of a pound a day.  (with the tube)  4. Learning to do my research.  and finally, 5. to have tools given to me to help her in future meal times.  We are still hoping to have the Aspergers screening done as well before we go.  It will be good to know either way.  I'm sorry to say, you still have to pray!  (whoa, that was a lot of rhyming)





29862 N Tatum Blvd. #2038
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