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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!

Monday, November 03, 2008

Happy Halloween

Thanks to the beautiful weather we were able to go trick or treating to family and friends houses. Hannah seems to be doing better, we are actually off of antibiotics now. So hopefully we kicked this pneumonia finally. She received the pneumovax vaccine last week. and I don't take her out when the weather is cold because that all seems to make it worse. Her teacher has been coming to the house twice a week. We have been very busy making up for the 2 months she missed. She is so smart it really helps her not fall behind.
The kids all had a great time Halloween. Even Grandma dressed up for work, we ate dinner at her work then went trick or treating. They all were tired by 8, and home and in bed by 9. I have the greatest kids in the world! lol, and it was a good thing! The night b4 I did not sleep much. At 2am I got a call from my neighbor that her water broke, My mom watched the kids while I got her to the hospital. Her family is all out of town, so I couldn't leave her by herself, and she was moving fast. On Halloween morning at 3am she delivered a 8lb 12oz. baby girl. So as usual, things are always eventful around here!

Monday, October 27, 2008

A Gentle Breeze blew through our lives‏

Saturday, Oct. 25Th, at 3:00, My mom's 13 year old Boxer, Breeze died of a heart attack. Breeze was a huge part of our family and will dearly be missed! To bring a smile to the situation... My Grandma once told my mom, "If you'd treat a man like you do that dog, you'd have one!" My Mom replied, " If a man treated me like my dog, I'd have one!". We love and miss you, and will never forget you Breezy! Wanda, Beckie, Brittany, Ashley, Hannah, and Anthony

Saturday, October 11, 2008

pictures from the Omaha trip


Sorry it has been a while since my last update. Our trip to Omaha was more stressful than I expected. We left Hastings Tuesday night and stayed at the Rainbow House. Her procedure went well, they decided not to put the jelly bean camera down her because the bleeding from the biopsies they took would ruin the images and make the test worthless. So they are going to have her swallow it at a later time. She recovered quiet quickly. She has been through this so many times, she is amazingly resilient. After she was released we went back to the Rainbow House. She seemed good at first, quietly working on a puzzle for about an hour, then she fell asleep. I didn't think nothing of it since she had such a big morning. When 3:30 came I was getting her ready for the appt. with the immunologist. She wouldn't even wake up and felt warm. I transferred her from the bed to the stroller to the van and visa versa to the Dr's office without her really waking up beyond a bat of the eyes and a moan or two. They took her temp and it was 103. Dr. Kettlehut checked her out and sent us back to Children's E.R. With a list of labs he wanted done while we were there. I quickly drove the 2 miles back to the hospital. When we got there Dr. Zapata, One of our G.I. Dr.s was waiting for us at the door. In that short time her temp spiked to 105. She lost her color and quickly got black circles under her eyes. I seemed to be handling all this with a calmness I never felt b4. Then the nurses started to get nervous and the look in their eyes was something I never want to see again. They x-rayed her several times, initially thinking the had perforated something in the procedure that morning. Finally at about 7:30 they brought me to their computer to show me the pneumonia in the top right lung. Once we got her fever down she quickly came back. They gave her a big dose of antibiotics, and then a script to go home with. We had planned on coming home that night, but they called the rainbow house for us, because they want to keep us there to make sure we did OK through the night. We did not get out of the E.R. till around 9. I was glad to take refuge in our 2nd home! I love the rainbow house, We have "Family" there. People don't stare funny at Hannah. She is just another kid there. It is the closest we have to feeling normal. But it is a short lived love. and I was quick to come home the following morning to the rest of my angels. She is doing better now, still have been dealing with fevers, but nothing like that day. The other day we walked to pick up her brother the 2 blocks to the school, She asked if she could run, cause "mama, I love to run". I let her a little, of course I ended up carrying her the rest of the way home, and a breathing treatment when we got there, but that brief moment of freedom was like medicine to her soul.

Sunday, October 05, 2008

Staring out the window

I am the little girl staring out the window
Watching my sister sing.
I practice the songs
At home,in my room
cause I'd love to be in that class.
But I am the little girl staring out the window
Waiting for someone to call
I want to go play
Like other kids do everyday
But no one seems to recall.
But, I am the little girl staring out the window
At the doctor's office again
I repeat the same trick
To distract myself from the worry cause
I have a condition
No one can fix.
Cause I am the little girl staring from the window
As my Mom drives me to another doctor
in another town, or state
I get so tired of all this
I just want to be a "normal" kid
Who does not live Her life
Staring out the window.
Rebecca Lynn 2008