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Saturday, December 27, 2008

Holiday Horsepower Drive

Holiday Horsepower Drive
A wonderful Group we got to meet in Omaha

What a Merry Christmas

Christmas morning brought a surprise from Santa and not far behind that a surprise from the Doc. with a discharge from Omaha Children's Hospital. We loaded that van to the very tippy top. Good traction though. We needed it. From Omaha to Lincoln it was sleeting. We stopped in Lincoln around 2:00 and went to the Golden Corral for Christmas dinner. By the time we were done the weather had cleared and we had a beautiful, fun, Christmas carolin, ride home. About an Hour later there was a knock on the door and our dear neighbors and Hannah's best friend, were at our door with presents and food. Thank you so much to the Hoyt family, their church family and DTE Rail Services.

Christmas mornin

On our way home

Beautiful Day

I love the kids in the background


and more food


A Happy man

nobody drop anything, we'll never find it
Alyssa Hannah's bestest friend.
When visiting with Santa she was asked what she wanted for Christmas. She asked Santa for Hannah to have a good Christmas.

How can that not brings tears to your eyes!

Before Christmas

Hannah had surgery Monday to have a GJ tube replace her mickey button She had a rough time but did good Tuesday. Franci, our school nurse and dear friend, brought my Mom and kids up that night.So we were all together for Christmas!
Out walking
Thankful to have them all together

That face says it all!

I think she's happy

Teaching her baby how to read

Saturday, December 20, 2008

Everybody knows me, Mama

And again Hannah is a star. She appeared with Santa Clause in the Omaha World Herald, and the next day was interviewed by KPTM 42, an Omaha TV station. They asked her what the best thing about Christmas was and she said, " Having your whole family together."

So far what I have been told is that they are going to try her on these IVIG infusions for 3 months. If they are not working then they want to start her on chemo meds and start feeding her TPN. which means they will start feeding her through an IV into her vein. Both which are dangerous for someone with a compromised immune system. My GI doc is not satisfied with this solution and He is consulting with Denver childrens an John Hopkins Hospital, for their opinions.

I can't even begin to explain what is going on in my head. I think maybe I'm still in shock over this. If you spend antime with Hannah, you would know she has such a wonderful outlook on life that It's hard to believe that she is as sick as she really is. Please keep us and the Doctors in your prayers.

Wednesday, December 17, 2008

My lil Elf

Monday, December 15, 2008

Adapt & Overcome

Well. I seem to have a moment to update. Hannah is receiving her first infusion of Intravenous immunoglobulin (IVIG) right now. She fell asleep at 7 pm. Sick and in pain. For the last three days.... or has it been 4? She has been picked and poked on. They have ordered so many labs that it has taken 4 days of giving blood. The max they can take from her a day is 30 cc. Then they changed her formula to a higher calorie formula. So she spent all day with it coming out both ends. So then they changed it back to the formula we were on before. After watching her do this every year I just want to yell at everyone to get away from her and leave her alone. But I dare not give up now. They are really leaning toward this Common Variable Immune Deficiency. I'm still doing research. But from what they're telling me. These infusions will help boost her immune system. But we still will have to deal with what damage has already been done to her intestines and lungs... and whatever else. These infusions last about 4-5 hours (She has tiny little veins so it has to run slowly) and given to her every 3 -4 weeks. So Thank God Hastings has an infusion center. Food for thought! Hannah's infusions depend on plasma donations. So for all those donors out there...Thank you Thank you, Thank you. Well, I best get to sleep. She will be up at 5:30. God bless!

Friday, December 12, 2008

December 2008

Sorry for the delay in updates. The cold and flu season hit and our work doubled with Hannah. Hannah was admitted to Childrens in Omaha yesterday. We will be here around 2 weeks for more tests and stuff. I asked the dr. least night if he thought we would be out for Christmas, and he said not to count on it. I was'nt but it is still not something I wanted to hear. It is always so hard tearing our family apart over the Holidays. gotta keep this one short but I will have more time to keep this updated, Our love and prayers go out to you all!