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Sunday, July 05, 2009

so far this is what I know...

this is taken from a referral letter from the Doctors in Omaha requesting to be seen in Cincinnati....

Hannah Copley has an as yet undefined condition characterized by elements of immunodeficiency and enteropathy with the result failure to thrive. She has been followed closely and evaluated extensively at Children's Hospital and Medical Center since October 6, 2003.
Hannah's evaluation has included input from multiple specialists. She has seen no less than five pediatric gastroenterologists, two pediatric surgeons, five pediatric hospitalists, two endocrinologists,two behavioral health practitioners, one neurosurgeon, two rheumatolologists, and one immunologist. She has been hospitalized at Children's Hospital, Omaha, five times for a total of 56 days and counting.In addition, she has been seen at Denver Children's Hospital and has been admitted to many times to count at her local hospital.
She is currently being evaluated and managed for common variable immunodeficiency. She has been noted to have poor T-cell responsiveness and a very low mannose binding protein level.
Evaluation at Cincinnati Children's Hospital has been recommended as they are the premier site in the nation for the evaluation of pediatric gastrointestinal disorders.

We are waiting for all the authorizations for Nebraska Medicaid to prove that we have exhausted all other options and have to go out of state. When we went to Denver we went through this process but it was more difficult, but she was not considered "disabled" at that time. I'm guesstimating we are looking w/in the next week or two. But in reality we are on call.
I am not sure yet what I need, I am in the process of paying my bills and budgeting now (or I was b4 I started this!... focus Beckie!!) I received a $250 check from "12 Omaha women who care" no return address or anything (God Bless you all) which I am again guesstimating is at least half of what the trip will cost.
It is at least a 12 hour drive, so I will have to take it in 2 days, Hannah won't be able to do more than 6. I'm having Joe check my fluids and air pressure, stuff like that, tomorrow.
The kids Ashley and Anthony start summer school tomorrow and Brittany starts detasseling any day now. Which will be good for them, and me. Hannah's care has stepped up alot more, though I have no beeping alarm going off every 5 hours, I still find I can't sleep. Just to much to do, and now that I have a baby monitor I can get them done. She was up late with a headache last night, and the night b4 we had lab come back with low blood sugar. I am up to 3 cups of coffee a day... this is not good!