somebody slow this roller coaster down!

Well... Drama, Drama, Drama! I had my stress test Wednesday, I failed it. So Wednesday I am going in for Cardiac Cathereterization. Not my first choice for a reason not to vacuum! My heart issues are not related to caffeine of salt intake or cholesterol issues. I don't drink a lot of coffee, and never had problems w/cholesterol or diabetes, and anyone with heart issues needs to talk to their cardiologist b4 cutting salt out. With my heart condition I have to increase my salt, and this is a mistake that many people make he said.
But anyway, Hannah is on her second antibiotic for the month for a bad cough, again. We were not able to go to Omaha because of the snow storm, so we r in the process of rescheduling. well keeping it short for now, Joe is down from Lincoln and Him, Me and Anthony are on our way to somewhere in northern Nebraska, Road Trip! My Mom is taking the girls for the weekend while escape briefly. Love and prayers to all!

Weather in Nebraska

We survived

Kickin back in the Infusion Center

Saturday Night Movie

Well, we survived the infusion! The most dramitic part of it was was placing the I.V. which takes at least two pokes and alot of searching everytime. It took about 5 hours, But she tolerated it well. Thank God! Now it is a waiting period to see what happens, We have an appt in Omaha again on the 26th.

life

helping him get ready for school

visiting Fred, grandma's Kitty

Grandma and Hannah

taken out our back door the other morning

Well what a week it has been. Friday I went to see my heart dr. for a pre op check up ( having my 2nd surgery on my shoulder, from my car accident last year) anyway, my blood pressure is running high (and you thought I was Joking!) This morning it was 148/92 and I'm on 2 different blood pressure meds. So they said I'm not having surgery right now.

Hannah is been starting to have a terrible cough again, and my pediatrician is on vacation. I know we will be okay without him, but I just don't like to. Tomorrow we will be at Mary Lanning for probably all morning and early afternoon. She will be receiving another infusion. Dr. Attard in Omaha called me... himself... last week. Since she has gotten out of Children's she has still maintain her weight but not gained. He said that in two weeks after this infusion we don't start seeing a improvement that they are going to start feeding her through an I.V. Mentally I am not prepared for this. I know that every time i even think about the pressure on my chest is tighter... you know, with the issues with my blood pressure, I wonder if all the stress and trauma in my life has maybe, just finely for truly broke my heart. I'd probably qualify for some study of what chronic stress does to a person! lol

It's Just me

In the Arms of an Angel video by Beckie

Back to School

They have always been so close... like twins

Hannah's big little brother

Well tomorrow the kids go back to school for the first time in 2009. I have enjoyed them home but at the same time praise God they have something else to do for 8 hours of the day. Getting used to Hannah's new schedule has been exhausting. Her pump is running faster at night so I am up more with accidents and filling up her formula. Reminding her that she can not spin her new button around, or to be more careful when she has her pump attached to the pole every 5 minutes. With a GJ tube there is a tube that runs all the way to her intestines, pulling the tube out or displacing the tube out of her intestines and into her stomach results in a tube replacement procedure under sedation. Hannah has a difficult time with anesthesia because she is MH susceptible. Sometimes getting Hannah to realize her disabilities is very difficult, Like yesterday when her brother and her were jumping off the bed to see who could get the farthest... attached to an IV pole... I think the heart doc is going to have to adjust my heart meds!

My lil Rockstar

Click here to see Hannah's new video

http://ksolo.myspace.com/actions/showSongProfile.do?rid=865716&sid=26711&uid=6530793

http://ksolo.myspace.com/actions/showSongProfile.do?rid=893871&sid=27060&uid=6530793

Holiday Horsepower Drive

Holiday Horsepower Drive

http://www.holidayhorsepowerdrive.com/

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

Food

and more food




Grandma

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

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.

My lil Elf

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!

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!

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!