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Friday, July 24, 2009

Good news from Cincinnati Children's Hospital

We have an itinerary for Cinncinati! We will be leaving August 9th, she has 2 days full of appts. on the 11th and 12th. She is being seen by G.I., Immunology, Oncology, and Hematology. If all goes ok We should be home by the next weekend! Praise the Lord and thank you for all the prayers!

Sunday, July 19, 2009

Thanks to Raleigh Kelsey and Dave Worrell for thinking of Hannah and our family for their annual Benefit! There is more to come, I will post info as I receive it.

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!

Saturday, July 04, 2009

Another Adapt & Overcome moment from the Copley's

Hannah's backpack for her infusion pump is huge!! Her bag of TPN is over 2 liters and is light sensitive. it run 24 hours. no breaks. I went to Wallyworld... I mean Walmart... last night and found this lil rolling suitcase. Much Better!! :)

Univerity of Texas sings Hannah Happy Birthday

Visitors from Omaha Childrens Hospital

Steve Peoples, a race car diver with Holiday Horsepower Drive

What a great Guy!!

Extreme Makeover... lol

The University of Texas and Louisiana State University keep the College World Series excitement going at Children's!

Playing Jenga with LSU

They were singing her Happy Birthday!

Several Husker greats stopped by Children's Thursday. She enjoyed meeting Danny Noonan, Tom Ruud, Barrett Ruud, Bo Ruud, Johnny Rodgers and Jim McFarland. Barrett and Bo still play in the NFL!

Thanks for coming, guys. We had a great time!