Copley Crew

2011-08-24T10:19:00.001-05:00

So Dr, Fisher said that the IRP team has been seeing her for a year now. All the test that they have run have given them no answers, no definition to her Autoimmune enteropathy diagnosis that Cincinnati gave her 2 years ago. Nothing that they have tried to do has worked for her to get her to tolerate her feeds. or eating orally. She is fully dependent for 22 hours a day on TPN with lipids. (No that is not her rolling backpack for school she is carrying around, it is about 10 pounds of her daily nutrients and calories being pumped into her heart) The other 2 hours of "Tube free time" she has Ethanol injected into her central line to keep her from getting another life threatening infection. They are stopping her anti-rejection meds and weaning her off her prednisone that she has been taking for 8 years. They want to "clean the slate" and see what her body does, since "they" themselves have never seen Hannah have over 30 bouts of diarriah in 24 hours, or puke up everything she eats, and been in a normal pain scale range of between 6 - 8... daily, her "clean slate" normal! I do not look forward to the next few months, having to watch her live a life of being Undiagnosed is more frustrating than if I had to live with myself. At 10 years old Hannah is the strongest person I know!
So we call in her weight weekly and then they will plan on surgery for scopes and biopsies to see what her Lil 27 kilograms body does on it's own, when it fully rejects her stomach and intestines, Please pray for her.

Hannah at her IRP appt. August 23, 2011

Hope 4 Hannah Benefit

2011-05-08T09:23:00.000-05:00

For more details go to
Facebook group Hope 4 Hannah
click here to RSVP H4H Benefit

2011-03-25T19:36:00.000-05:00

So today the nurse cordinator called me from Omaha. I quickly caught on to that sound in her voice as she tried to pump me up with encouraging words about this Transplant eval. I relived a few weeks a go when they were wheeling her into PICU and the "Team" of docs ( who just a few months ago also said They WERE the last resort) That we may never know what Hannah"s exact DX is and that everything they do beyond this is experimental.

So why Transplant? Well they do know that Hannah's immune system is rejecting her own intestines. Because of the lack of nutrition because she absorbs absouletly nothing she eats, She is dependent for her total calorie intake apon a 2 liter bag of TPN that runs 16 hours a day. This has to be ran through a broviac central line that runs to the valves in her heart.

The problem is they have tried antirejection meds with no theraputic results enough to get her off the TPN in 2 years. hannah has had several life threating infections and line issues that has caused her 15 line placement procedures. which is where lies the even bigger problem. When she loses a line she lose that access point. she is very seriously close to losing all access.

So then the next step would be to try a transplant of her organs and hope that she does not reject that too. Bone marrow transplant is still on the table but there has been no surviving pediactric patients for them to really know if this would be beneficial for her or not. The reality is she only has a 60 percent chance of surviving a year with the bowel transplant. All i can hear is 4 years ago the docs telling me she wouldn't make it to 10. She turns 10 in June. I am not ready to let her go! We will fight to theres no fight to fight!

I Love my tubie :)

2011-01-30T18:39:00.002-06:00

Feliz Navidad!

2010-12-02T06:46:00.000-06:00

Food Matters Official Trailer

2010-11-09T07:14:00.000-06:00

Autoimmune enteropathy. Her body's immune system attacks her own God given organs but doesn't protect her from a common cold. Just ask Hannah how much Food Matters! Time to shake up this world and wake 'em up!

October 2010

2010-10-24T16:36:00.000-05:00

The First of Autum.

2010-10-10T18:56:00.000-05:00

Holiday Horsepower Drive and Eagle Raceway

2010-08-16T12:40:00.002-05:00

The importance of medcation routes

2010-08-06T12:10:00.000-05:00

As most of you know, Hannah does not eat. All her nutrition is supplied and routed through various ports in her body.
    Route #1    a central line that goes straight to her heart.
                       Through this she receives her TPN and
                       various IV meds.
    Route #2     a G-Button that goes straight to her stomach.
                       Through this she receives her meds
                       for her Acute Gastritis and bleeding ulcers.
    Route #3     a J-Button that goes straight to her intestines.
                      Through this she receives her Neocate
                       formula and other meds that need
                       to avoid her stomach.

Over the years I have struggled with the mislabeling of some of her medications when it is concerning the route. and still struggle to this day with this issue even in her care plans with home health.

In May this article came out in the news from Omaha.....
Officials said 19-month-old Alicia Coleman died at Children's Hospital

Such a terribly devastating incident for all people involved spurred me into action when it came to Hannah's routes, so this is what we do now with a lil help of some nail polish :)
It has made life much more simple and as one of our nurses said "made our job easy!"

Our God is greater

2010-07-24T09:46:00.000-05:00

cookies.wmv

2010-06-17T13:03:00.001-05:00

CopleyCrew baking cookies :D This weekend marks 1 year since Hannah has been allowed to eat anything, yet she loves to cook

Love Story (Country Version) recorded by Beckie | -MySpace Karaoke

2010-06-10T12:38:00.000-05:00

Check this out and watch Hannah doing karaoke :)

Love Story (Country Version) recorded by Beckie -MySpace Karaoke: "MySpace Karaoke video/audio recording of Taylor Swifts Love Story (Country Version), as performed by Beckie. Watch it on MySpace Karaoke. Think you can do better? Record your version now!"

Courage Is - The Strange Familiar [Full Song]

2010-05-07T08:11:00.000-05:00

2010-05-01T10:13:00.001-05:00

Nebraska Methodist College students, several of Zeta Iota Chi's (Nebraska Methodist College's Sorority) members and Campus Crusade, had over 30 people buy shirts and will be running in support of Hope 4 Hannah. What an absolutley awesome bunch!! Get out there and support them in their bright pink Hope 4 Hannah singlet Sunday May 2!

Lincoln Marathon will end inside Memorial Stadium

2010-04-28T21:02:00.000-05:00

click here to check out the story Lance Schwartz with 1011 out of Lincoln did on Hannah!

Lance's Journal with Hannah about Make-a-Wish

miss me? :)

2010-04-03T09:20:00.000-05:00

Let me start this update by mentioning that with our recent change in respite care qaulifications, We have found a nurse who can work with Hannah for up to 20 hours a week. This makes me sooooo Happy!! For 1, I have 3 other children. 2, I have my own medical issues that I have been neglecting 3... well you get the point.
Hannah received her DX of Autoimmune Enteropathy after our visit in Cincinnati. It has been almost a year, and I am utterly shocked to still realize how rare and "still being researched" this desease is. I have, through a Facebook group page ( Hope 4 Hannah) found a handful of Moms from all over the world, that have children with this and are struggling for information just as much as me. In search of some kind of support group, realizing that the few of us maybe our only support group! I find how much it is needed when the doctors skirt around issues, because they just don't know. Issues like being on an anti rejection medication forever (Tacrolimus in Hannah's case) which is comparable to receiving chemo, is the only treatment for this desease.
For the last 2 years, Hannah has been home schooled. She has not been able to eat for a year, she has a central line and is fed Tpn 24 hours a day and has formula feeds running through a J- button. The doctors have been battling keeping her prograf levels stable, and slowly moving up her feeds so she can stop the TPN. but now she has gastritis and an ulcer in her tummy from the bile back up. She continues to throw up at least 3 -4 times a day, mostly during med time. We have had numerous issues with her central lines! Broviac were just not Hannah proof and she would wear a pinhole in them constantly, we changed to a purple power line, which is resiant to breaking. That has worked well, but her chronic line infections have not fixed the need to pull and replace these lines constantly. they say she is multivisceral transplant canidate. so salvaging these lines are the prime concern. They believe her intestines are leaching bacteria in her bloodstream (like a colander) and setting up a home in her line.
When we left the hospital last week they told me her Bard polyurethane purple power central line was not compatible with an ethanol lock. But Thursday the Doc said she consulted with the other Docs on the other side of our huge planet. So Monday after her IV antiobiotics stop, and starting prophylactic ethanol lock therapy for 2 hours a day. yes, I will be injecting gas into my lil girl! WHAT NEXT! Which (like everything else Hannah deals with) does not have alot of literature on. So we are praying this works! and does'nt eat up the line in process!
She also has had issues with low hemoglobin. She had her second blood transfusion on the 19th, and last week it was running low again. As hard as TPN is on her organs, We have seen what putting nutrients into hannahs body enternally has done for externally. she has went from 30 pounds last year to 50 pounds currently, As well as put on a couple inches, She has grown all her hair back, She looks healthier now then when she was a baby.

Updates to come... I promise :)

2010-03-11T12:30:00.000-06:00

Hannah is remaing stable, Doctor appointments in Omaha went good yesterday. I will update more soon!

Hannah's Wish is Granted!

2010-02-27T12:00:00.002-06:00

Make a Wish granted Hannah's wish Thursday with a huge all day shopping spree in Omaha. Hannah had a blast with her family, wish granter's, and her "body guard" limo driver.
As her mother I can't express enough gratitude for giving Hannah the chance of a lifetime, it was truley a wish come true!

Home Sweet Home

2010-02-16T09:54:00.001-06:00

After 19 days in the hospital, Hannah has come home!

Long drive home was shortened with a long sweet nap :)

2010-02-10T09:39:00.002-06:00

what an absolutley beautiful story Brian Mastre did on Hannah! We are so honored!

click here-> www.wowt.com/home/headlines/83772577.html

February 6, 2010

2010-02-06T07:33:00.001-06:00

well we had a another rough spell, They started running TPN through Hannah's IV and it went downhill from there. Hannah's poor little veins are exhausted, after finally getting a iv started Wednesday night, It only last 12 hours. After an emmotional episode our charge nurse was able to start another in her 1 and only vaible vein left in her arm. If this one goes they will try her feet next. They stopped the TPN and are running basic maintenance fluids through it now, to try to get this IV to last longer. She is now officially out of renal failure, Her kidneys and liver are back to normal levels. Her labs are still coming back positive for yeast in her bloodstream, so they still have her and antibiotics and antifungals. Thursday they did an ultrsound of her heart and found a thrumbos (blood clot) as of yet I have no idea what they are going to do about that. The Hospitalist has been consulting with oncology and cardiology. They think it's a source of infection for the yeast, so to give her an anti coagulant might put the yeast in other places they dont want it right now, but to leave it is also risky if it were to break off and move into her heart or brain.
Yesterday was a nice calm day. with no TPN running she was much more comfortable and even got to go to Movie Night to go watch "UP" in the auditorium last night. They will be taking her down for surgery today or tomorrow to place a temporary line so they can start back up TPN. They said the line will just be temp, because they know full well it will get infected with the yeast, but she needs the access to give her her nutrition.
Hannah is the strongest person I know! she has done all this without taking ANY of the moriphine they have ordered for her.

2010-02-03T08:52:00.000-06:00

Yesterday was a busy day! we all pushed Hannah a lil, and got her out of bed and into a bath, and even walked her to the playroom for a Game of WII with Dr. Dolterand Melissa. While she was busy I got a chance to go shopping with Sharon and Carole (Sharon's sister) Thak you Girls!! I so needed that :) When we got Hannah back to her room, She got a visit from the Rosenquest's. So nice to see people from home!! Makes me homesick. Then Channael 6 swooped in to do a story on Hannah and autoimmune enteropathy, which will air Sunday. Wow what a day, right?!

It wore her out, she ended the evening with a sore throat on top of her tummy pain. and then had 1 of her 2 iv's go bad and had to be pulled out. They started running TPN and lipids through the other (which is extremely painful and hard on your veins).

This morning Doc says he is checking with renal to see if her creatinine is low enough that her kidneys can handle contrast for a MRV of the veinous system, so they can map out where her new line will go. and get that surgery in the works. Her white blood cell count was elevated this morning so we are watching her sore throat closely. When you are immune compromised the littlest thing can go severe very fast.

We had almost 100 people join the Hope 4 Hannah Facabook group in 24 hours. Hannah was excited to see the numbers climb! Thanks so much for all your support!

Love, Blessings, & Barefeet,

Beckie

February of 2010 already....

2010-02-01T08:13:00.000-06:00

Well, Hannah has been quite sick the last 5 days. Thursday morning Hannah woke up screaming and crying that her stomach hurt. I checked her temp and it was 103. I made some calls to home health and checked her temp again and it was 103.7. Called ambulance, by the time they got her to ER (which was not very long) It was 104.7. They admitted her to Mary Lanning and fought off temps all day. By the next morning they discovered she had staph and yeast infection in her Central line. and she was transferred by ambulance to Children's here in Omaha.

Hannah is septic, whichs means she is as sick as she possibly can get. the infection is in her blood and all through her body, causing all her organs to not function properly. Her liver and spleen are inflamed. Her kidneys are not functioning properly and she may have to receive dialysis. Appendicitis is also in question, but she is still to septic for it to be removed. They pulled out her brand new purple power line and she has 2 IV's (1 in each hand) to receive all her fluids and medicines. Yesterday she was more coherant, the fevers have stopped after they pulled her line, so that helps. Sharon's sister came out to visit and her and Sharon brought her some ballons which helped brighten up her room. I plan on trying to do more of that today to help cheer Hannah up.

I can't thank everyone enough for all the prayers we most certainly need it right now! And please don't forget to pray for Hannah's sisters and brother. They last time they seen their sister was when she was rushed out the door with 5 EMT's right b4 they left for school.

Infection Control: Precautions and Sterile Dressing Changes

2010-01-09T08:32:00.001-06:00

This video needs to be watched by anybody who comes in contact with Hannah! and if you work at MLMH on the ped floor... watch it 2 times!! yeah I sooo went there!

snowday2010.wmv

2010-01-05T08:56:00.001-06:00

The Life That's Chosen Me - Karen Taylor-Good

2010-01-05T07:18:00.001-06:00

2010

2010-01-01T21:22:00.000-06:00

well here it is a new year and all I can think is I am completly fried! Of course 3 days of stress, lack of sleep, and 650 miles. . . and thats just 3 days of 2009!! Not a day has gone by the last year that I dont wake up with the thought that I could lose Hannah. and yesterday was the cherry on top of my over the edge state when I had to listen to my heavily drugged baby scream in pain for over an hour. I just feel so damn helpless. Hopefully this new line will help us bring 2010 in with less trauma... thats all I wish for this year!

sorry for the delay in updates....

2009-12-21T06:40:00.000-06:00

Hannah has bee officially dx'd with Autoimmune Enteropathy, with IPEX syndrome not being ruled out. She is doing well and has kept herself out of the hospital for a wonderful 3 weeks now. This is a record!!
with this news comes much transition for me... mentally. We have a name for our enemy now, but he is so rare. I am still doing alot of studying, but from what it sounds like I think I need to really push this bone marrow transplant... If anybody can help me get my hands on this book please contact me!! Volume 1, 4th edition, pediactric Gastrointestinal Desease. I swear to God it is the book her Doc in Cincinnati are reading! The way they are treating her is qouted in here.

But anyway, I will try to snap out of my mental quick sand and get back to work, I promise! :)

I search a quiet place,

For reverent solitude,

One where I can fix,

My strained attitude.

I’m not in the mood,

To think or speak,

I feel kind of tired,

I feel kind of weak.

My brain won’t absorb,

The things you have to say,

I need a quiet place,

So I can find my way.

Back to this place,

Where I can hear your tune,

I’ll take a short detour,

But I’ll be back soon.

is it November already??

2009-11-01T08:47:00.000-06:00

Oh my how the time flies by! October was'nt much better than September. 2 weeks of all us being sick, from an intestinal flu, to strep throat, to H1N1, it has all hit my house.
Hannah spent 4 days in Mary Lanning hosp. after the intestinal flu hit her. while she was there, my 10 year old Ash, had strep throat. Then a couple days later, 3 hours after they released Hannah. I was in the ER with Ash again, who spiked a 103 degree temp... H1N1. That was wednesday. Thursday it hit Anthony and we were all started on Tamiflu. Friday it hit Brittany. but thankfully not as hard. Today is Sunday and Hannah is running a low grade temp of 99.3, nothing to call the dr. for yet, but just enough to make you hold your breath and pray!
The Dr.s are holding the tachrolimus right now. which is good considering it depletes her already fragile immune system. her left side is still causing alot of pain. They are giving her hydrocodone for pain.. and she is actually asking for it today. I realize how much pain she is in when I see that the medicine they are giving her is the exact same thing I was on after my knee and 2 shoulder surgeries, even same dose. and it barely subsides her pain.
We have missed everybody this week! Due to our quarintined situation we have not been out and about. Thanks to everyone who made the extra trips across town to help our family! I really don't know what I would do without all of your support! It means so much to us all.

What is Autoimmune Enteropathy?

2009-10-24T11:14:00.000-05:00

The diagnosis they have been tagging Hannah's lab's is autoimmune enteropathy. What is that? here is an article I found...

Advances in the understanding and management of autoimmune enteropathy

Summary

There have been real advances in understanding the pathogenesis of autoimmune enteropathy, including determination of specific autoantigens. The most important clinical association is with IPEX (X-linked immune polyendocrinopathy) syndrome, which is due to mutation in the Foxp3 transcription factor, a molecule critical in generation of regulatory T cells. Association of non-IPEX autoimmune enteropathy with T cell activation defects further point to impairment of T cell tolerance mechanisms as the primary underlying cause of autoimmune enteropathy. This also explains the frequency of other autoimmune manifestations. The centrality of T cell responses in autoimmune enteropathy, rather than B cell autoantibody production, as previously thought, is further suggested by the finding of late-onset gut autoimmunity in APS-1 (autoimmune polyglandular syndrome-1), a condition where negative selection of T cells within the thymus is disrupted due to mutation in the Aire (autoimmune regulator) gene. However, this form of autoimmune enteropathy is milder because the immune target is within entero-endocrine cells rather than absorptive enterocytes. There have also been important changes in management, with introduction of more potent immunoregulatory therapy, and more recently the use of bone marrow transplantation, which may theoretically offer hope of a cure in what frequently used to be a fatal condition.

Keywords: Autoimmune enteropathy, IPEX syndrome, Foxp3, APS-1, Aire, Bone marrow transplantation

Warwick Medical School, Clinical Sciences Research Institute, Clifford Bridge Road, Coventry CV2 2DX, UK

PII: S0957-5839(06)00085-6

doi:10.1016/j.cupe.2006.07.008

© 2006 Elsevier Ltd. All rights reserved.

The Climb

2009-10-15T05:24:00.001-05:00

Cincinnati has a treatment plan...

2009-10-08T22:10:00.000-05:00

After Spending almost the whole month of september in the hospital, I am overwhelmed with the news that Cincinnati has finally given word of a plan! a little nervous and nauseated, but relieved at the same time.
Monday Hannah will start taking Tacrolimus a drug that comes with some serious side effects, and strict precautions. Alot like getting chemo. Hannah's health is so fragile right now... I think now more than ever I will need all the help and support I can get. This is going to make her very sick.
Why are they starting this med? Tacrolimus is an anti rejection drug given to people who have had an organ transplant. Basically they think Hannah's body is rejecting her own organs.
Omaha is cordinating all her care through Cincinnati's guidance and then we will go back to Cincinnati in 6 months.
I agree with this plan, I think it is a long time due to have a plan! I pray this plan does something good for Hannah. But I am also very intimidated. And it takes alot to do that to me! But it time to buck up and take this head on!
WE WILL NOT GO DOWN WITHOUT A FIGHT!!

Hannah's Song

2009-09-15T19:45:00.005-05:00

http://www.songsoflove.org/

and these are the days of our lives...

2009-09-15T10:24:00.003-05:00

Sometimes my life is so crazy I can't even believe it myself!! It take me back to a therapist I had who said... "Beckie, I think you create your own crisis". Well, all I can say to that is... okay nevermind, I won't say it!

Hannah and I got to Omaha right at 10 am. Got her checked in and prepared for her procedure, the most dramatic part of that was taking her earings out... sorry you were late for lunch, Melissa! During her procedure they came out to tell me that the liver biopsy would not be done at this time due to a (what I thought was maybe a bug bite) on her upper outer thigh. My initial thought was , "you gotta be kidding" but the nurse explained that If it was something infectious it could be in her blood, and they would risk infecting her liver. So they biopsied that! One thing I am learning, When you remain undiagnosed after 7 years of extensive searching, they biopsy everything... even bug bites! and lets not forget the raised eyebrows along with the questions "did you let her outside??" aaaahhh HHEELLOOO!!!!! She is 8! yes, she went out and sat on the porch maybe 2 or 3 times this week. So Sorry for letting her live a little!
I was had a conversation with a dear nurse about the fact on letting Hannah live a little.... It has been such a fine line, and as her Mom, a very horrible decision I have been left to make, and I strongly believe that I am doing what is best for her.
I do my best at keeping her out of populated places, and when we are out she wears her mask and knows her rules of no touching. she has a suitcase of pumps and fluids, so that limits her activity as well, no playground, no slides, no swings... no pools no sprinklers... need I go on??
So here is the Golden Question... do we let her live a happy full 10 years, or do we lock her in this bubble and make her depressed and bitter at life for 30??

well anyway, after her scopes and biopsies of her intestines, she was released shortly after, BTW... Melissa, she was terribly disappointed she had to come home and miss putting new babies out in the playroom!! She was still pretty loopy when she was released and slept all 3 hours on the way home. She has been good, but yet low key since.
G.I. Dr. called from Omaha this morning, seems we have been talking directly about 3x a week latley. He said her potassium was low, we had this problem in June was not happy to hear that 1 again, low potassium cause heart issues. so up we go on the 24 hour TPN concentration which is causing her liver levels to be rising which is why they wanted a liver biopsy... and I think I am getting dizzy!
I can't thank you enough for all the support and prayers, it is what keeps me going... recently heard of someone having to take a vacation to send off over 300 Thankyous due to the recent death of a family member. I'm thinking I have about 3 years or more of thankyou's to send out... vacation sounds good!!

5 am and can't sleep... good time to update :)

2009-09-13T05:15:00.004-05:00

woke up this morning feeling sick, came downstairs cause I didn't want to wake anybody up with my puking.... come out of the bathroom and there stands Hannah... her tummy hurts too. she dragged her ladybug bag of pumps down the stairs... sorry neighbors.... oh wait, my stupid neighbors kept me awake till 2 am hanging out under my bedroom window AKA our front porch... so sorry? hhmmmm, not so much!

OK... venting over, let me go get my coffee and glasses and we will get on with this updating thing! :)

Okie Dokie, well, my Bronchitis got better, slowly.

School began, routines been adapted too.

Hannah has been to ER in Omaha twice this month.
1st time because her J-button cracked, overnight,but no surgery, but an awake procedure... they gave her pain medicine and verset ... which made her stutter for 3 hours after the procedure... kinda creepy!
2nd time because there was a pinhole in her central line. no surgery. The surgeon RESIDENT that was repairing her line asked her if she stuck a pin through it... she looked at him like he was nuts and asked "why would I do that?" Hannah is very aware of the fact that when her line is down she spends the night on IV fluids with potassium and dextrose (which burns like crazy going in).
If Hannah is not talking much people have the 1st impression that she is 3 or 4 years old. She is sooo 8, and very intelligent. She is also very sarcastic... hehehe, I have no idea where she gets that!
She still has 2 pumps running 24 hours a day... which explains my lack of sleep, if it isn't 1 beeping it's another, most usually because she rolled over and pinched her tubing. oh and then there is a third... but that is only 1x a week for about and hour. That is her new Vivaglobin. the first and only sub Q infusion. and I believe that she is the 1st around here to receive it.
Monday she is having surgery. Upper and lower scopes and biopsy's, the are also going to do a liver biopsy because her levels are still running high. this biopsy comes with more complications then the scopes so they will be keeping her at least overnight.
Britt's root canals had to be reschedule due to Hannah's surgery, so the dentist has her on call for that... crazy!! I need 4 of me, 1 for each kid!
Ash and Anthony are doing good, they love school so life is good right now! Hannah has a teacher coming out 2x a week. really looking forward to that, she has an amazing mind, it's fun to see it in action!
Well it is after 6 already... got to go start getting things prepared for Hannah, she is going to be running pedialyte through her pump today in preparation for surg, tomorrow.

Love,Blessings & Barefeet, Beckie

Wash your Hands!!

2009-08-28T09:07:00.005-05:00

With School starting this week, this is a very big concern of mine for Hannah, my lil bubble girl...did I mention that we live in Adams Co. !?

2nd H1N1 Flu Fatality in State

A spokeswoman with the Nebraska Department of Health and Human Services says the second state resident to die from the swine flu passed away at an Adams County hospital. The Adams County woman in her 50s died late last week. The woman also had several chronic, underlying health conditions, a press release states, including asthma, heart disease and diabetes. Because of state statutes, the woman’s name and other details about her case cannot be released. The state's chief medical officer, Dr. Joann Schaefer, said the virus, also known as the H1N1 flu, can be a very serious illness for those who have chronic health conditions. Federal officials have said the flu strain could kill possibly 30,000 to 90,000 people later this year, mostly young children and young adults. Seasonal flu typically causes 30,000-40,000 annual deaths, mainly among people over 65. Health officials advise only those who are moderately or severely ill or someone with underlying medical conditions see a doctor. Most people who get the virus can recover on their own, they said.

August 26, 2009

2009-08-26T09:56:00.003-05:00

Thanks for the prayers everybody, yesterday was a whirlwind! I have a bad case of bronchitis and am struggling to breathe, had extensive conversations directly with Dr. Zapatta, 3 times yesterday, Hannah's liver is failing due to the lack of use, so they r starting her feeding pump back up, slowing weaning her on to that. And still running the TPN . 2 pumps running 24 hours a day. Plus trying to get Ashley and Anthony ready for their 1st day of school today. and to top it off, Brittany missed her 1st day due to a trip to the Dentist who informed me she needs 2 root canals, how do her teeth get that bad so fast? just was there for a cleaning in March!! Not sure if she will be able to go to school tomorrow, this morning her lip was at least 4 times the normal size, poor thing. I have never had a root canal, heck, I have never even had a cavity, so I do not know personally what she is going through, but it sure doesn't look fun!
I have not heard back from Cincinnati yet, so I am making a call, it's been 2 weeks today. (not that I'm counting) Hopefully I can get myself to the Dr. today, but I don't see it being able to fit in my schedule unfortunately. I just need a good ole shot in the butt of antibiotics!! Anyways... off to survive another day!
Love, Blessings, & Barefeet, Beckie

Hope For Hannah Benefit

2009-08-23T14:51:00.005-05:00

This Was absolutley awesome!! Thankyou to everyone!

Khas News story

NTV News story

Have you figured me out yet??

2009-08-21T08:32:00.002-05:00

okay okay, I'm here to update, as most of you know, I am not good at commincation, unless I can sing how I feel through a song! lol. But here we go....

Went to Cincinnati last week, Lots and Lots of questions!! 7 years worth of history to share so I am sure it is all overwhelming for them. Plus they drew a bunch of blood, then they said that they would be in touch and probably have us come back for some scopes and stuff.
My overall feeling is that they do not have the same sense of urgency that is needed for her. Ever since she has started this 24 hour TPN thing things have been crappy. There is not a day that goes by that she has not had to deal with headaches or abdominal pain, Her blood sugar has been low, her liver and kidney levals have been high, all common side effects of the TPN. She has gone over that hill of more bad days then good, and I am struggeling with my redheaded patience to get somebody to care enough to DO SOMETHING NOW!!
I just keep replaying in my head what the hospitalist in Omaha told me... " Go home and have a normal summer " None of my children have had a NORMAL summer because of this, we all have stayed home watching her get sicker and sicker. I'm constantly watching one of her sisters carry her up the stairs while her brother carries her pump, because she is to dizzy and weak. her burst of energy do not last more than a couple of hours, and they take everything out of her.

I am just tired of having someone so tiny yet strong have to fight so hard to live.

Under Construction

2009-08-15T13:46:00.002-05:00

This site is currently under reconstruction. Please check back soon for updates! :)

Updates on Hannah

2009-08-06T13:40:00.003-05:00

She has had a very rough couple of months. She now depends on a central line, (a tube that runs in her underarm up through her a vein in her neck and straight to her heart) for all her nutrition. which comes with alot of complications. Complications that apparently our local hospital wont touch and I have to rush her to ER in Omaha... 3 hours away.
Sunday morning on the 9th, Hannah, my BFF Sharon and I will be loading up in my lil Mini van and driving to Cincinnati Children's Hospital to see some specailists that hopefully will bring us some answers to what is the problem and how we fix it, or at least treat it.
Hannah remains strong and full of life. She knows no other way of living. she has lived with this for over 7 years.If it wasnt for her ability to laugh at this crazy life and make the best of it, I dont think I could. She is the one that reminds me everyday to keep fighting. To be strong in my faith, and live with the grace and dignity that has comes with living this life.
Please keep us in your prayers and we battle the road ahead. and the other drivers on it!! lol

Good news from Cincinnati Children's Hospital

2009-07-24T10:53:00.003-05:00

We have an itinerary for Cinncinati! We will be leaving August 9th, she has 2 days full of appts. on the 11th and 12th. She is being seen by G.I., Immunology, Oncology, and Hematology. If all goes ok We should be home by the next weekend! Praise the Lord and thank you for all the prayers!

2009-07-19T11:29:00.002-05:00

Thanks to Raleigh Kelsey and Dave Worrell for thinking of Hannah and our family for their annual Benefit! There is more to come, I will post info as I receive it.

so far this is what I know...

2009-07-05T16:03:00.003-05:00

this is taken from a referral letter from the Doctors in Omaha requesting to be seen in Cincinnati....

Hannah Copley has an as yet undefined condition characterized by elements of immunodeficiency and enteropathy with the result failure to thrive. She has been followed closely and evaluated extensively at Children's Hospital and Medical Center since October 6, 2003.
Hannah's evaluation has included input from multiple specialists. She has seen no less than five pediatric gastroenterologists, two pediatric surgeons, five pediatric hospitalists, two endocrinologists,two behavioral health practitioners, one neurosurgeon, two rheumatolologists, and one immunologist. She has been hospitalized at Children's Hospital, Omaha, five times for a total of 56 days and counting.In addition, she has been seen at Denver Children's Hospital and has been admitted to many times to count at her local hospital.
She is currently being evaluated and managed for common variable immunodeficiency. She has been noted to have poor T-cell responsiveness and a very low mannose binding protein level.
Evaluation at Cincinnati Children's Hospital has been recommended as they are the premier site in the nation for the evaluation of pediatric gastrointestinal disorders.

We are waiting for all the authorizations for Nebraska Medicaid to prove that we have exhausted all other options and have to go out of state. When we went to Denver we went through this process but it was more difficult, but she was not considered "disabled" at that time. I'm guesstimating we are looking w/in the next week or two. But in reality we are on call.
I am not sure yet what I need, I am in the process of paying my bills and budgeting now (or I was b4 I started this!... focus Beckie!!) I received a $250 check from "12 Omaha women who care" no return address or anything (God Bless you all) which I am again guesstimating is at least half of what the trip will cost.
It is at least a 12 hour drive, so I will have to take it in 2 days, Hannah won't be able to do more than 6. I'm having Joe check my fluids and air pressure, stuff like that, tomorrow.
The kids Ashley and Anthony start summer school tomorrow and Brittany starts detasseling any day now. Which will be good for them, and me. Hannah's care has stepped up alot more, though I have no beeping alarm going off every 5 hours, I still find I can't sleep. Just to much to do, and now that I have a baby monitor I can get them done. She was up late with a headache last night, and the night b4 we had lab come back with low blood sugar. I am up to 3 cups of coffee a day... this is not good!

Another Adapt & Overcome moment from the Copley's

2009-07-04T10:52:00.002-05:00

Hannah's backpack for her infusion pump is huge!! Her bag of TPN is over 2 liters and is light sensitive. it run 24 hours. no breaks. I went to Wallyworld... I mean Walmart... last night and found this lil rolling suitcase. Much Better!! :)

Univerity of Texas sings Hannah Happy Birthday

2009-07-04T08:25:00.003-05:00

Visitors from Omaha Childrens Hospital

2009-07-04T07:50:00.006-05:00

Steve Peoples, a race car diver with Holiday Horsepower Drive

What a great Guy!!

Extreme Makeover... lol

The University of Texas and Louisiana State University keep the College World Series excitement going at Children's!

Playing Jenga with LSU

They were singing her Happy Birthday!

Several Husker greats stopped by Children's Thursday. She enjoyed meeting Danny Noonan, Tom Ruud, Barrett Ruud, Bo Ruud, Johnny Rodgers and Jim McFarland. Barrett and Bo still play in the NFL!

Thanks for coming, guys. We had a great time!

June 30, 2009

2009-06-30T14:54:00.003-05:00

well I just got out of a meeting with the docs. it looks like they r going to send us home for a "few days" b4 we go to Cincinnatti, so now I have to figure out how the hell we r going to get there. as if being here for two weeks isnt draining my account enough. obviously these people have no idea what it is like to be a single mom of 4. Im so sick of this constant battle... physically mentally emotionally....
3 hours ago ·

2 day training starts tomorrow for me to learn how to care for her central line and feedings at home. probably going home Thursday. Dr. Kocoshis in Cincinnati has been contacted and is receiving all her files. He is the Medical Director of the Pediatric Nutrition & Intestinal Care Center, and Small Bowel Transplantation Program.
8 minutes ago ·

Took these pics this morning, 1st time outside in 2 weeks!

Updated pics

2009-06-27T07:45:00.006-05:00

June 27, 2009

2009-06-27T07:04:00.003-05:00

Wow has it been a month already??! Here are some updates on Hannah from my facebook page...

Hannah's sick again... strep throat this time. weight down to 14.3kg.Started taking cefadroxil today, and now started throwing up.... I want to cry, but afraid I wont be able to stop.
May 30 at 2:30pm

Hannah's weight down to 13.7, she is still throwing up and not eating. on r way to see dr. @ 2:30. may be admitted. I'm really reaching out for your prayers right now... please
June 2 at 1:08pm

Hannah has been admitted to Mary Lanning Hospital.
June 2 at 5:36pm

we will b there a few days. her potassium is really low, and there is acid in her blood, maybe from the prednisone she has been on. She is on a heart monitor due to the potassium issues, last night was a long night!! and r lil hosp. does not have a bed for the parent of wifi, so i missing Omaha Childrens right now! Thx for all the prayers we really need them!
June 3 at 8:36am ·

still in Hosp. keep up the prayers, for my other kids as well , they r really struggling with this too.
June 4 at 2:34pm

Looks like Hannah will be in Mary Lanning through out the weekend. She is still not doing good. visitors welcome, it would help lift her spirits. Thx to all for all the prayers for r family.
June 5 at 11:31am

Dr. let Hannah come home today, we were having some issues with the hosp. following her diet. Lots of new diet changes and some meds changes so this week will be critical, on learning new routines and recipies. fun fun, lol
June 6 at 6:46pm

oh by the way, my van now has freckles like me!! due to r hail storm last night... damit
June 6 at 7:08pm

Getting ready to go to Omaha tomorrow to meet with a new dr. for Hannah. Trying not to get my hopes up, but feeling like we are on borrowed time.
June 9 at 5:35pm

Home from Omaha, but Hannah's on her way to be admitted to Mary Lanning again. Her ph is low and she is dehydrating again. will let u know more when I do.
June 10 at 6:33pm

Hannah is not doing good. She is still at Mary Lanning Hosp. they tried to let her eat some food yesterday, and it made her severely dehydrated even while on IV fluids and her feeding pump. Her Dr. is waiting for the Dr in Denver to call us back. I am not online there, this is the 1st x in 3 days. so call me or message my mom. Any volunteers to give my other kids some respite time would be greatly appreciated.
June 13 at 2:13pm

Dr. sent Hannah home to be with the Family today.
June 15 at 10:00pm

Beckie Copley is really frustrated right now!! Hannah's looking dehydrated again. called the dr. and he said stop her pump till 3 in the am. and call him in the am. I think she needs something now. her eyes are black again and she has lost .3 kg since yesterday. . . I am debating going with my gut and taking her to the ER and havin them draw some labs.
June 16 at 9:10pm

at 8:58am June 17
went to ER last night, her levels were down but not in the critical level (YET) so they sent us home with instr. to stop her pump and give her absolutly nothing until 9am. Hello!!!!!!!! this am she is even worse looking. she was barely able to hold up a bottle of water. I put pedialyte through her feeding pump at 8 and called the office, r reg. dr... Read More. is not in today and they want her to come 10:45 to c a dr who doesnt know her well. WTF!! I just left a message with the G.I. clinic in Omaha, her wt is down to 13.9 kg. I figure dr. in Omaha will admitt her up there. They dont seem to give up so easily, and that what I feel is being done here. send her home to be with her family, and then wash there hands of her. Well screw you!! we r not going down w/out fighting! I'll go wherever I have to go!

Omaha called. They want Hannah admitted. so as soon as my Mom gets off of work Hannah and I are headin to Omaha... I'm already missing my other kids!
June 17 at 4:01pm

rough night for Hannah last night, Her blood pressure is still running low. I'm mentally exhausted, I think I need to run down to the caffeteria and get a cappaccino... or 2
June 19 at 11:04am

Hannah is having surgery Mon to put a external central venous catheter put in. they are going to start feeding her by TPN.
June 20 at 2:34pm

Hannah turned 8 today. She was in good spirits despite feeling crappy and being in the hospital. June 21 at 11:21pm

Hannah went through surgery okay. Still struggling to keep her heart rate up, but like usual she keeps the docs amazed by her ability to be coherant and up and moving around despite having a heart rate in the 40's.
June 22 at 6:22pm

Morning! Dr. update, Hannah's electrolytes were low yesterday, so they up'd her TPN fluids. When they did, she was having severe pain in her central line area. Nobody knows why so they gave her a dose of pain medicine and she has been out ever since... it is 8:45, she never sleeps this late. Her heart rate is low, and murmuring. One minute they r telling us we might go home, then this. So sick of this roller coaster
Wed at 8:46am

well looks llike we may not go to Cinccinnati, they want to continue the TPN throughout the summer, at least 10 weeks w/out anything oral, to give her gut a rest and slowly reintroduce things to see if the healing time will make any changes. I'm going along with this 4 now, because it has never been done. But I dont understand how this will fix things. In my lil world of common sense, this will start all over again.
Yesterday at 10:10am

we're going to Cincinatti... we're not going... we are going, somebody please make up my mind!!!!
Yesterday at 7:19pm

at 8:23pm June 26
I just spoke with the G.I. doc. He has been combing through her records and consulting with emmunology. They gave me to names that they are thinking of. IPEX Syndrome and XLP disorder. They will be talking to Cinncinati Monday to see when they can take her. Like a dumb ass I googled XLP. now I just want to throw up... "XLP is an extremely rare ... Read Moredisease affecting only males . The disease is thought to affect less than 1 child in a million .The average age of onset is 2.5 years of age and nearly 75% of the children are deceased before 10 years of age."

I went Home Thursday and spent some time with Britt, Ash, and Anthony, then came back that night. I hate having to be 3 hours away, but what makes it easier is knowing Hannah is getting the specialized care she needs. My love and prayers go out to all of you who care to come here and read this... and even to the ones who don't! lol

may 23,2009

2009-05-24T07:37:00.009-05:00

The Copley Crew 2009

at the library

sunday may 17,29

2009-05-17T10:25:00.002-05:00

well we made it through the week. The morning of Hannah's surgery last Monday she weighed 14.2kg. she weighed in at 15.1 this morning. We had to cancel her occupational and physical therapy for a while and limit her activity so she don't burn up any calories. The last few days she has started regaining her energy, so keeping her sedentary is getting harder, but it is good to see her coming back to being herself again. Update more later gotta run for now.

hannah's procedure for 5/11/2009

2009-05-10T17:58:00.003-05:00

Hannah is having her transgastric jejunal tube replaced tomorrow at Childrens in Omaha.

found a video on utube http://www.youtube.com/watch?v=AiZDoXRWLe4&feature=related

Primary Immunodeficiency (PI) diseases

2009-05-10T15:36:00.002-05:00

Immunoligist Appointment Update:
Hannah's monthly infusions of antibody replacement therapy the past 5 months has raised her IgG2 levels, which means it has been confirmed That Hannah has PI. We are switching to Vivaglobin a new infusion that she will get 1x a week, sub-Q instead of I.V. There will be a Home Infusion service come out and train me how to do this. Our hopes r that if this continues to go well they will let her go back to school next year. Dr referred us to a pediatric rheumatoligist, though I am not quiet sure where that is going.

trying to catch up

2009-05-02T12:08:00.004-05:00

Paul Ishii, one of the volunteers who looked at my van.

and Anthony enjoying hanging out with a fireman!

it's has been difficult for me to keep this updated lately. Our family is under some severe stress the last few months. my mom had her surgery and is going back to work Monday. I have had my shoulder surgery and it is coming back slowly. My blood pressure had still been giving me problems, i stopped counting new bruises from passing out. then last Friday I really screwed up my ankle, and now in a brace up to my knee... i think the problem is my body is just not keeping up with the rest of me! lol, My ADHD keeps me going. Ashley has strep throat, now Hannah is real sick, been in ER twice since Thursday night. Dr. called me this am and we went in to lab for more blood work. God she so needs a port!! She has to be in Omaha on Monday, seeing Immunologist, and then scheduled for surgery to have her GJ-button replace. the surgery is not certain now that she is sick, but her button is in bad shape and seriously needs to be changed or she is not getting her nutrition. at all. So when we get to Omaha I am fully expecting to be admitted. How it has worked for the last year in a half, is that Hannah gets to come home because she is "stable" When she gets sick like this, well you get it. So now we go into the mode of our family being tore apart again. I am everybody, mom too, main source of transportation, so when I'm in Omaha, My mom is stranded with my other 3. we do have amazing people who sacrifice and do so much... Steve and Bev Kelsey!! God we love you! who help us overcome, I just carry serious guilt issues not being able to do it all, I have always been stubborn and independent! oh , and then... and your saying can there possibly be anything else!... lmao. Oh hell yes there is always more. Monday my small antifreeze leak became well pretty bad. and yes boys this has been confirmed now by 3 mechanics. all week I was getting about 10 mpg of antifreeze... and you thought gas was expensive! But God always seems to answer our prayers and sent us wonderful angels... in race cares, baby!! :) Holiday Horsepower Drive and fellow members of Dirtdrivers.com posted our situation, and we quickly got a network bigger than Verizon of people offering there help. Opening their hearts to my little family who is no different then any other who are just struggling to survive.and the whole thing reminds me to drop on my knees, slowly it hurts, and praise God for my crazy life because I truly don't know how to live any other way. and wouldn't even want to try.

Britt's youth group formal

2009-04-27T23:20:00.001-05:00

New pics of the kids

2009-04-27T23:01:00.002-05:00

Brittany, 13 in July

Ashley turned 10 in March

Hannah, 8 in June

Anthony turned 6 in April

Hannah's Hot Rod

2009-04-26T13:33:00.005-05:00

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!

2009-03-04T09:41:00.002-06:00

Miss you Grandpa!

click piano to here me sing amazing Grace

new pics

2009-02-01T12:30:00.001-06:00

Hannah's pump

2009-02-01T10:55:00.004-06:00

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!

2009-01-31T07:15:00.002-06:00

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

2009-01-24T17:54:00.002-06:00

We survived

2009-01-17T21:24:00.005-06:00

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

2009-01-14T11:03:00.004-06:00

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

2009-01-06T22:08:00.004-06:00

In the Arms of an Angel video by Beckie

Back to School

2009-01-04T21:12:00.005-06:00

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

2009-01-03T09:47:00.002-06:00

Click here to see Hannah's new video

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

2009-01-01T09:44:00.002-06:00

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

Holiday Horsepower Drive

2008-12-27T17:09:00.002-06:00

Holiday Horsepower Drive

http://www.holidayhorsepowerdrive.com/

A wonderful Group we got to meet in Omaha

What a Merry Christmas

2008-12-27T15:00:00.005-06:00

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

2008-12-27T14:13:00.003-06:00

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

2008-12-20T04:30:00.004-06:00

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

2008-12-17T19:19:00.003-06:00

Adapt & Overcome

2008-12-15T20:25:00.004-06:00

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

2008-12-12T09:37:00.002-06:00

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

2008-11-03T09:00:00.004-06:00

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!

A Gentle Breeze blew through our lives‏

2008-10-27T09:55:00.004-05:00

Saturday, Oct. 25Th, at 3:00, My mom's 13 year old Boxer, Breeze died of a heart attack. Breeze was a huge part of our family and will dearly be missed! To bring a smile to the situation... My Grandma once told my mom, "If you'd treat a man like you do that dog, you'd have one!" My Mom replied, " If a man treated me like my dog, I'd have one!". We love and miss you, and will never forget you Breezy! Wanda, Beckie, Brittany, Ashley, Hannah, and Anthony

pictures from the Omaha trip

2008-10-11T08:16:00.001-05:00

Hannah

2008-10-11T07:15:00.003-05:00

Sorry it has been a while since my last update. Our trip to Omaha was more stressful than I expected. We left Hastings Tuesday night and stayed at the Rainbow House. Her procedure went well, they decided not to put the jelly bean camera down her because the bleeding from the biopsies they took would ruin the images and make the test worthless. So they are going to have her swallow it at a later time. She recovered quiet quickly. She has been through this so many times, she is amazingly resilient. After she was released we went back to the Rainbow House. She seemed good at first, quietly working on a puzzle for about an hour, then she fell asleep. I didn't think nothing of it since she had such a big morning. When 3:30 came I was getting her ready for the appt. with the immunologist. She wouldn't even wake up and felt warm. I transferred her from the bed to the stroller to the van and visa versa to the Dr's office without her really waking up beyond a bat of the eyes and a moan or two. They took her temp and it was 103. Dr. Kettlehut checked her out and sent us back to Children's E.R. With a list of labs he wanted done while we were there. I quickly drove the 2 miles back to the hospital. When we got there Dr. Zapata, One of our G.I. Dr.s was waiting for us at the door. In that short time her temp spiked to 105. She lost her color and quickly got black circles under her eyes. I seemed to be handling all this with a calmness I never felt b4. Then the nurses started to get nervous and the look in their eyes was something I never want to see again. They x-rayed her several times, initially thinking the had perforated something in the procedure that morning. Finally at about 7:30 they brought me to their computer to show me the pneumonia in the top right lung. Once we got her fever down she quickly came back. They gave her a big dose of antibiotics, and then a script to go home with. We had planned on coming home that night, but they called the rainbow house for us, because they want to keep us there to make sure we did OK through the night. We did not get out of the E.R. till around 9. I was glad to take refuge in our 2nd home! I love the rainbow house, We have "Family" there. People don't stare funny at Hannah. She is just another kid there. It is the closest we have to feeling normal. But it is a short lived love. and I was quick to come home the following morning to the rest of my angels. She is doing better now, still have been dealing with fevers, but nothing like that day. The other day we walked to pick up her brother the 2 blocks to the school, She asked if she could run, cause "mama, I love to run". I let her a little, of course I ended up carrying her the rest of the way home, and a breathing treatment when we got there, but that brief moment of freedom was like medicine to her soul.

Staring out the window

2008-10-05T16:57:00.003-05:00

I am the little girl staring out the window

Watching my sister sing.

I practice the songs

At home,in my room

cause I'd love to be in that class.
But I am the little girl staring out the window

Waiting for someone to call

I want to go play

Like other kids do everyday

But no one seems to recall.
But, I am the little girl staring out the window

At the doctor's office again

I repeat the same trick

To distract myself from the worry cause

I have a condition

No one can fix.
Cause I am the little girl staring from the window

As my Mom drives me to another doctor

in another town, or state

I get so tired of all this

I just want to be a "normal" kid

Who does not live Her life

Staring out the window.

Rebecca Lynn 2008

Resources

2008-10-03T08:35:00.005-05:00

http://www.appliedmedical.net/amtclamp.htm

http://www.oley.org/index.html

http://www.tummytunnels.com/home.html

Over the last year, I have struggled with spending hours on the Internet, researching various items that I needed for Hannah. Living in a small town, finding what I need has become an added stress that is not needed! I found myself becoming increasingly frustrated at the amount of time I spent looking for just the right things for her. There are a lot of terrific products out there, but I found that sometimes I would have to “stumble” across them. So from now on I will be posting links to wonderful resources I have found and use. Please share this info with anyone you know in a similar situation. I will soon be creating business cards to hand out for people with out access to computers who need help with obtaining these products.

An example of my problems... I had some of Hannah's dresses taken in to have a button hole sewn in to adapt to her tubing for her pump. They did a wonderful job! but the price was beyond my budget! I found "Tummy Tunnels" Which provides better access to her G-button and is much cheaper (even with the shipping costs). They are super simple to apply and she loves them!

2008-09-28T19:21:00.003-05:00

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

2008-09-26T18:11:00.002-05:00

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

2008-09-23T22:31:00.004-05:00

Moday update

2008-09-22T06:48:00.003-05:00

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

2008-09-18T07:57:00.003-05:00

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

2008-09-17T22:52:00.001-05:00

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

2008-09-16T12:28:00.003-05:00

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

2008-09-12T18:07:00.003-05:00

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

2008-09-12T09:27:00.003-05:00

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

2008-08-25T23:39:00.003-05:00

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

2008-08-23T22:54:00.002-05:00

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

2008-07-29T22:20:00.002-05:00

My Baby Girl's video

2008-07-21T07:20:00.002-05:00

update on Hannah 7-18-2008

2008-07-19T07:13:00.003-05:00

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

2008-07-17T01:42:00.001-05:00

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

2008-07-12T15:17:00.003-05:00

July 12, 2008

2008-07-12T11:12:00.003-05:00

"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.