Britt's youth group formal

New pics of the kids

Brittany, 13 in July

Ashley turned 10 in March

Hannah, 8 in June

Anthony turned 6 in April

Hannah's Hot Rod

Thank you to everyone involved in making our night so special. It was a mini getaway that my family desperately needed!!
also a special thanks to Jacy and Paula Todd at Butler County Motorplex, Buddy Ray Jones and Rachel with the Holiday Horsepower drive, and Chad Ebel with Race Day Prints.

Find out more info
about Holiday Horsepower Drive here http://www.holidayhorsepowerdrive.com/
about Butler County Motorplex here http://www.butlercountymotorplex.com/
about Race Day Prints here http://racedayprints.com/

Oh how amazing is his Grace!

Miss you Grandpa!

click piano to here me sing amazing Grace

new pics

Hannah's pump

500 ml. bag air free

which means she can be upside, sideways whatever

and not get air bubbles in her line

The pump

so easy to program and track mls per hour

total intake, everything

everything in pack ready to plug in

the rubber clear clamp use see locks the bag tube

to the extension tube, preventing accidental disconnection

and leaks. It is called an AMT Clamp .

Hannah is very tiny for her almost 8 years.

this is the super mini backpack. Zevex offers several sizes.



When we are out and about hardly anyone notices
that she is wearing a feeding pump

Zevex is wonderful! It has adapted well

to an very active

child's life!

This is for my friends at Oley . Hannah uses the EnteraLite® Infinity® Enteral Feeding Pump from Zevex. We have been using it now for 2 years. Just recently Children's in Omaha also started using them. Wonderful product! She uses a I.V. pole when not wearing the backpack.

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!