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Sunday, September 28, 2008

Brittany 12
7th grade

Anthony 5



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

Friday, September 26, 2008

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!

Tuesday, September 23, 2008

H4H Benefit

Monday, September 22, 2008

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!?"

Thursday, September 18, 2008

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.

Wednesday, September 17, 2008


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!

Tuesday, September 16, 2008

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 :)

Friday, September 12, 2008

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. :)


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!