change is in the air

Every time I post a new blog I tell myself that the next one will be done the next day.  Then something happens.... I forget!  Today is our 1 month anniversary of being in the hospital.

So I apologize for the lengthy intermissions.  Cadence will be discharged from the hospital on Monday.  She will begin a modified DTU (day treatment unit) at the Kartini Clinic.  In the late evenings, weekends and Tuesdays, she will be with me at the RMD house!  The doctors have decided to cut things back a bit.  Staff wise.  They thought a lot was getting lost in translation between the 2 doctors and the family therapist.  So now we will be dealing majorly with Dr. Moshtael and Kathy, our family therapist who will help equip us for when we go home with various lessons and plans.  Dr. M asked for C's menu and that is what they will focus on feeding her at the DTU.  There were too many variables at the hospital to figure out what, if anything else, is going on with C.  They don’t know if it’s the food, the handler, both, neither, or anything else when she is there.  At the clinic there will be only one food handler and Cadence.  This person is a trained therapist in this type of situation.  Unlike the hospital where it was a different nurse (sometimes even different throughout the day) every day and their concern is with typical pediatric heath care.  They are trained at the hospital to a certain extent on things to look for and calculate the percentages and caloric intakes.  There is apparently much more to this than that!  (can you imagine?)  We are still waiting to find out if the aspergers screen will happen while we are here.  I would like to find out as soon as possible so we can move on with life in whatever form that may be.  I just hate waiting.  Monday afternoon Home Health will be stopping by the RMD house to bring C a pump and show me how to use it.  I have to administer her feedings overnight.  She will have to keep the tube for a few more weeks.  Hopefully soon we can get rid of that silly thing.  I should have more info before Monday so I will do my VERY best to get back in here before that!