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Tuesday, September 16, 2008

Update from Omaha

Well where do I start. Yesterday Hannah and I left around 8 a.m. ~ Because of Hannah's IBD we stop at every rest stop, we have so many Nebraska maps, but it has taught her how to read them. We arrived at Children's at 11:15 and were there until 1:00. Then drove to another side of town to see the immunologist till 3. Needless to say we did not get home till 7. I think I have jet lag. lol.

The G.I. doc is going to do another upper endoscopy, colonoscopy, and a capsule endoscopy. She has had many of the first 2, but the capsule thing is a new thing. Scary too. It is generally recommended in children 9 years or older. Hannah is 7, and the size of a 3 year old. But at this point it is extremely important they do this test. They have to put her under for these tests. which is always a concern with her malignant hypothermia. She had gave them 6 viles of blood and said Ta Ta, and then off to the immunologist we went.

His appointment did not turn out news that we were prepared for. (Denial was such a more comfortable place to be) He is withdrawing her from school. She can not risk getting sick anymore. So we are now going to Home school her, and are on a new road of what that in tells.

This also calls for some major changes to our apartment. Investing in air cleaners, hepa filtered vacuums... and I cant imagine what more. We do have 3 other kids coming in and out from school. Last week I had to pay out of pocket and order online pediatric face masks because nobody in town seem to have them. Thank God I have always worked in the medical field, and even took an infection control course in college. Awareness is a wonderful thing. I know, I know... that totally contradicts my land of denial thing... I can pretend though :)


Anonymous said...

Dear Beckie, I am so glad that you have added me to your e-mail list. Youknow, it is so easy for us to just hand out gas cards, and sometimes forgetall the human struggles that go with them. You and Hannah are truly angelson this earth. If you are okay with it, I will share your news at ourBoard meetings each month. Please keep us updated. We care, and will keep you and your family in ourprayers. Laura D., Special Children's Fund

Anonymous said...


I am so sorry to hear the news!! I have missed Hannah so much and that news is so devastating! The positive thing is she is so smart that she will be an easier one to home school... except the fact that you will have to have a lot planned! She will zoom right through!
I am so sorry to say I will not be able to attend the benefit but will be helping get things prepared with others at work. My daughter is a flower
girl in a wedding this weekend and next! Busy I know but I hate that I have to miss such an important event. Let Hannah know we all miss her and
are thinking of her daily. Let me know if there is anything I can do. Best of luck and we are all here for you.

Mindy Breckner
1st Grade Teacher-Lincoln Elementary School