Brittany 12

7th grade

Anthony 5

Kindergarten

2008-09

Ashley 9

4th grade

Wow how the time flies! Brittany is now in Middle School, and oh the social butterfly she is!! Totally lovin' being in her "own" school. As music still remains the main source of therapy in our house, She is caring that on. She sings soprano in the HMS Music Machine Choir, and also in South Central Nebraska Children's Chorale at Hastings College.She is very smart girl and does well in school. She is trying out for the basketball team when it's time. I've noticed alot this year that Britt is more mature than most the girls her age, but yet she is so much more innocent at the same time. She is a beautiful young lady and I am so proud of her.

Ashley never ceases to surprise me! She is in the 4th grade this year and has graduated to the Big sister mode at school. She makes mostly A's, reading at an 8th grade level. She is ADHD and bipolar, and a lil advocate about it. We keep her very aware and involved in therapy to teach her how to adapt and overcome. She is a member of the student council at school and is also in science club. The school and I always are aware that if Ash has had a bad day, and you cant find her, look for the nearest horse. She loves animals and wants to be a vet when she grows up. She is also in South central Children's chorale at the college.

Anthony is just lovin school, he is so proud to be in there with his sister. He still love his trucks, every trash day at 6 am he is out the door say hi and getting them to honk the garbage truck horn and announcing that his JoeJoe Daddy can work on their truck and fix it. All the kids did not take the news about Hannah being taken out of school very good. It has made the stress level in the house rather high. Keeping them all active in activities helps keep them sane. They are also in Awana / JR high youth group. Thanks to are angels from church who pick them up and take them there for me.

Hannah can not go, she cannot go practically anywhere anymore. Not even walmart. The doc said nowhere public. Next thing I need to get for her is a rain cover thing that goes over a stroller. I think I will be able to keep her contact precautions in better control that way. She has to be able to get out sometime, doctors and all. The house thing is driving her and I both crazy! Cant wait to get the curriculum for home school in process. Keeping us busy is our only source of sanity. I am on the look out for a good laptop. I am thinking of taking some more classes myself, while home schooling her, and I need to be more portable since we are out of town so much.

Speaking of out of town... Hannah and I will be leaving Tuesday night for Omaha. Going to our second home at the rainbow house. gotta to be checked in at the Hosp. early for her procedures. Also scheduled to see the immunologist at 4. so busy day. Hoping to be back home that night, but may take refuge in town till morning. Keep us all in your prayers. Having meet so many angels at the benefit was amazing, and gives us so much encouragement. Well I should go now, after I take the kids to school I'm going to see a man about some tires... Always makes the drive more relaxing to know you are that much safer!

Love, Blessings, & Barefeet, Beckie

Hannah & Jenna

Hannah got to meet Jenna, television host of Fox 4 &17, At the NTV station when she did her interview last week. We got this in the mail. She was absolutley thrilled!

H4H Benefit

Moday update

wow, what a weekend! Hannah was in the ER again Friday night, This time for stomach pain on the right side. They thought she had a UTI, and said her liver was a lil swollen. We went home on a another antibiotic. Saturday was beautiful! The benefit went wonderful. When I first thought Benefit, I didn't know much about them. I envisioned ... my southern upbringing type of family gatherin. Great music, good food, kids running all around havin fun, and getting to see everyone we love. I can't thank everyone enough. Sunday I got a call from Dr. Zoucha, Turns out she does not have a UTI. So they are suppose to call this morning to schedule a CT scan of her abdomen. All that I can think is " What now!?"

a Hannah moment

Yesterday Hannah had a CT scan of her sinuses. She wanted to wear her scrubs she got at The Denver children's hosp. that said "Nurse in Training" on the back and take along her build a bear that was dressed just like her. I didn't think much of it, I have gotten used to her outgoing, attention drawing, bubbly personality. After the scan we went to Walmart, as we were going through the register, the cashier asked if she was wearing her Halloween costume early. Hannah, without a hesitation, said " Nope, this is just my life."

All I could think was ... "How true!" She never ceases to amaze me with her view on life.

newspaper

Absolutely beautiful article was done on Hannah today. My Mom, I and my oldest daughter could not get through it with out tears. Thank you to Will Vraspir at the Hastings Tribune!

Update from Omaha

Well where do I start. Yesterday Hannah and I left around 8 a.m. ~ Because of Hannah's IBD we stop at every rest stop, we have so many Nebraska maps, but it has taught her how to read them. We arrived at Children's at 11:15 and were there until 1:00. Then drove to another side of town to see the immunologist till 3. Needless to say we did not get home till 7. I think I have jet lag. lol.

The G.I. doc is going to do another upper endoscopy, colonoscopy, and a capsule endoscopy. She has had many of the first 2, but the capsule thing is a new thing. Scary too. It is generally recommended in children 9 years or older. Hannah is 7, and the size of a 3 year old. But at this point it is extremely important they do this test. They have to put her under for these tests. which is always a concern with her malignant hypothermia. She had gave them 6 viles of blood and said Ta Ta, and then off to the immunologist we went.

His appointment did not turn out news that we were prepared for. (Denial was such a more comfortable place to be) He is withdrawing her from school. She can not risk getting sick anymore. So we are now going to Home school her, and are on a new road of what that in tells.

This also calls for some major changes to our apartment. Investing in air cleaners, hepa filtered vacuums... and I cant imagine what more. We do have 3 other kids coming in and out from school. Last week I had to pay out of pocket and order online pediatric face masks because nobody in town seem to have them. Thank God I have always worked in the medical field, and even took an infection control course in college. Awareness is a wonderful thing. I know, I know... that totally contradicts my land of denial thing... I can pretend though :)

Art project

Since Hannah has been out of school all week, we have went in to home school mode. Today Hannah decided to draw the logo's for the hospitals she has been in. :)

Update

Hannah has been real sick this week, in the E.R. twice. They think she has pertussis. We have an appointment with The G.I. clinic at children's in Omaha on Monday. She has lost a 3rd of a pound over the summer, so her feeding pump was upped from 73 ml/hr to 80 ml/hr. But since then she has been throwing up more and getting more stomach aches. The antibiotics she is on for the pertussis gives her more diarrhea which will make her lose more weight.... The frustration is almost unbearable. Then I got a phone call yesterday from the immunologist in Omaha... himself! Apologizing for not getting back to me b4 now, and asking me if I could come in on Monday while we're in town for an appt. (It usually takes months to get in) He also mentioned sending us to Cincinnati children's hospital. So after feeling like we are going nowhere over the summer or being "on a treadmill" as our school nurse Franci said. It looks like we are back to work. praise God! Gotta go return a phone call to the health dept. about her pertussis thing. Will update more when we get home Monday. Thank you to everyone who has been working on Hannah's Benefit. It is overwhelming to see how many people care about my baby girl!

Found some pics

Hannah at 1
vacation bible school 2006, 5 years old.... her hair was so thick
Awana Awards night 2007
Hannah with Melissa from Omaha Children's Hosp

With a baby chick on a field trip kindergarten(1st time) 2007

I came across these while looking for a baby photo for Ashley (assignment for school)

Prayer Request

As most of you know my Mom and I are from from Jacksonville Florida, Mom moving here just 4 years ago to help me with Hannah and the others after my divorce. We have absolutely no other family here, they are all in Florida. Please pray for them due the Tropical storm Fay, which has hit Florida 4 times this week. http://www.news4jax.com/video/17250552/ . We finally got a hold of my Grandma today, all businesses have been closed for three days and don't plan on opening till at least monday depending when the water goes down. Millions of people lost power and are still out. This storm has broke records. Any body in my family reading this... THIS is 1 reason I did not move back home! For my nebraska people... and we think we have pot hole issues... Florida is basically a large sand bar that we build roads on so when you set that in 3 feet of water for 4 days!.. We're talking potholes the size of houses! http://www.news4jax.com/video/17271430/
Love, Blessings, & Barefeet
Beckie

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

Click here to Visit CarePages today!

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!