Hope for Hannah Benefit

My Baby Girl's video

update on Hannah 7-18-2008

I got a call from the immunoligist. He said he does not agree with the Denver doctors that her problems are related to food allergies, he will be consulting more with her G.I. dr. I feel so lost and frustrated right now. this news has set us back to where we were before we even went to denver. I finally felt we were on the right road because we had a plan of action, and knew what we were dealing with. now all of that is thrown out the window.

Hannah's Friends - Compassionate Support for Families with Critically-ill Children

click here to watch video

http://www.youtube.com/watch?v=djaO2z1_eAw

Families around the world, regardless of culture, can relate to the emotions and difficulties that surround the potential loss of a child to a life-threatening illness.
Each year, more than 160,000 children die of cancer. Four in five are from low and middle income countries where childhood cancer is just one of many priorities. The treatment and care of children with these and other life-threatening childhood diseases requires a whole interdisciplinary team, to provide not just the medical treatment of the child, but also the psychosocial support for the child and the whole family. Community volunteers are an integral part of providing such care.
Impacts on Families What is not widely known or fully understood by the population-at-large are the broad and formidable challenges presented to a family that embarks on a journey to care for a child with life-limiting or life-threatening illness. The ongoing pilot program in Northern California, is rapidly illustrating that having someone with previous experience on such a journey to provide guidance and support can help these families immensely.
The Need for the Program In June 2006 PBS aired a documentary titled A LION IN THE HOUSE that illustrates very clearly the need for Hannah's Friends. The film follows the stories of five exceptional children and their families as they confront pediatric cancer. This film documents the stresses that can tear a family apart and also sheds light on growing up in the shadow of illness, as a patient and a sibling of a patient.

no training wheels

July 12, 2008

"Dr. Mark" The build a bear that Dr. Mark Puccioni the neurosurgeon, gave Hannah at her appt. in Omaha Monday the 7th.
Hannah made this with clay for me. :)
She also made this... notice the mommy bird is feeding the baby a worm.
what a man, what a man, what a mighty good man he is!

Hannah on the way home from Omaha.

wow a video! lol

Hope for Hannah

June 28, 2008

Carepages

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more pictures :)

June 2008

Hannah, Grandma, Brittany
Brittany, Anthony, Hannah, Ashley celebrating Anthony B.day the night b4 we left for Denver
The view fron the hospital in denver
Anthony and Ashley

Hello. I know its been a while, but our car accident in November slowed me down some, well actually alot. But anyway....

Hannah and I have been in Denver now twice. In April we spent 2 weeks there. Still no actual diagnosis, but we do know a little more. She definitley has an Immune Deficiency. Basically she has the immune sytem of a 90 year old. She has severe food and enviromental allergies. She is feed off of her pump only, 24 hours a day. she is on several medications, like magnesium, folic acid, I even add 1/8 tsp. of salt to her formula a day.

She is allergic to soy oil and corn oil. which is in everything! Not only alot of food, but also in some medicines, lotions, soaps, detergents, paper plates... etc.

She lost the rest of her hair. But has now got a full head of peach fuzz. which she is extremly proud of! We are seeing a team of immunoligist's in Omaha. She is trying a certain food, 1 at a time for 1 week. To rule out allergic reactions. turkey, peaches, and this week is carrots.

She gets tired easy so we use a stroller alot. but other than that She is a very normal, smart an ornery little girl. She turns a whopping 7 saturdy.

She is advanced in school... the girl is very smart! and has a wonderful outlook on life and her disabilities.

Brittany is almost 12 and stating at the new Jr. High next year. We are so excited! Her grades were mostly B's this year. She volunteers at the library and always has a book in her face. She loves to sing and is involved in every choir she can get to.

Ashley is also advanced in her school work this year. Reading and Art are her loved things to do. she carries around her sketch book and clay everywhere. She turned 9 this year.

Anthony turned 5 (while we were in Denver) and is starting kindergarden in the fall. He has the thickest red hair and need a hair cut at least once a month. lol. He loves his trucks and tractors, and fire trucks. and wants to grow up to fix big trucks like his JoeJoe.

Gotta go for now.

Love, Blessings, & Barefeet,

Beckie

Well we are in Omaha at Childrens right now. Hannah had her peg tube placement surgery wednesday. Had a rough time but today is looking much better. It's hard to see her in so much pain. But on the bright side it is so nice to see her lil face again w/out the tube in her nose. here are some pictures I have been taking. love you all!

Entry for July 18, 2007~ another update on my banana

Was in Omaha again Monday and then Grand Island yesterday. I've put 400 miles on my little car so far this week. Hannah and I both feel like we have walked 400 miles. She is passed out on the couch for the 2nd time today,and I am just mentally fried.
In Omaha we seen the feeding and growth team, includes 5 different doctors. She is 6yrs and 1 month, she weighs 14.2 kilos and is 100.5 cm tall(that is 3'3" and about 31 pounds) so she has maintained but not thrived at all. she is eating a very well balanced diet and on the pump 24 hrs a day. her formula alone is giving her 80 calories per ml and she gets 1400 ml a day, plus what she eats. They still cannot find any answers. She is going to have surgery on the 8th of August, they are going to put a button in her stomach for the feeding pump, so no more tubes up her nose. We will be there for about 2 or 3 days. Dr. Attard also talked about sending her to children's in Colorado. Do not know exactly when this will happen but it is in the planning stage now. They drew another 5 vials of blood and then we were on the road for our 3 hour drive home.
Yesterday I took all 4 kids in for their checkup and cleaning at the dentist. all went well. Hannah has gotten in a couple of her 6 year molars and it is causing some problems, Her little baby teeth are so crammed in there they are cricked. there is just no room. so we got some work to do there too.
Only 1 more month till school starts so getting all ready for that Anthony will be attending preschool this year at the public school, where does the time go...

July 11, 2007~ update on Hannah

Was back in Omaha yesterday. She had a MRI done ( It's amazing how strong she is, She is the size of a 3 year old. with her head all taped down and caged up, with her headphones on singing her heart out to Hannah Montana, I was in a rocking chair with earplugs and crying my eyes out, lol) Then we had an appt. with her neurosurgeon. She has a benign astrocytoma tumor. For treatment they will observe it closely and remove it when it when it gets bigger. He doesn't want to remove it now because of her other unrelated health problems, she is tiny and not strong enough physically. But praise God it is benign. she doesn't need radiation! We go back to Omaha next week to see the G.I. doctors.

a day at Brickyard Park

Mom's Day