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Wednesday, August 24, 2011

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





Sunday, May 08, 2011

Hope 4 Hannah Benefit


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

Friday, March 25, 2011


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!



Sunday, January 30, 2011

I Love my tubie :)

Thursday, December 02, 2010

Feliz Navidad!

Tuesday, November 09, 2010

Food Matters Official Trailer





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!

Sunday, October 24, 2010

October 2010

Sunday, October 10, 2010

The First of Autum.

Monday, August 16, 2010

Holiday Horsepower Drive and Eagle Raceway

Friday, August 06, 2010

The importance of medcation routes

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!"

Saturday, July 24, 2010

Our God is greater

Thursday, June 17, 2010

cookies.wmv



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

Thursday, June 10, 2010

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

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!"

Friday, May 07, 2010

Courage Is - The Strange Familiar [Full Song]

Saturday, May 01, 2010


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

Wednesday, April 28, 2010

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

Saturday, April 03, 2010

miss me? :)

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.

Thursday, March 11, 2010

Updates to come... I promise :)


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

Saturday, February 27, 2010

Hannah's Wish is Granted!

 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!

Tuesday, February 16, 2010

Home Sweet Home

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

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

Wednesday, February 10, 2010

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

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

Saturday, February 06, 2010

February 6, 2010

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.

Wednesday, February 03, 2010

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

Monday, February 01, 2010

February of 2010 already....

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.

Saturday, January 09, 2010

Infection Control: Precautions and Sterile Dressing Changes

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!

Tuesday, January 05, 2010

snowday2010.wmv

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

Friday, January 01, 2010

2010


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!

Monday, December 21, 2009

sorry for the delay in updates....

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.




Sunday, November 01, 2009

is it November already??


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.

Saturday, October 24, 2009

What is Autoimmune Enteropathy?

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.

Thursday, October 15, 2009

The Climb

Thursday, October 08, 2009

Cincinnati has a treatment plan...

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!!


Tuesday, September 15, 2009

Hannah's Song

video

http://www.songsoflove.org/

and these are the days of our lives...



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!!

Sunday, September 13, 2009

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


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

Friday, August 28, 2009

Wash your Hands!!


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.

Wednesday, August 26, 2009

August 26, 2009


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

Sunday, August 23, 2009

Hope For Hannah Benefit


This Was absolutley awesome!! Thankyou to everyone!

Khas News story

NTV News story

Friday, August 21, 2009

Have you figured me out yet??

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.

Saturday, August 15, 2009

Under Construction


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

Thursday, August 06, 2009

Updates on Hannah


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

Friday, July 24, 2009

Good news from Cincinnati Children's Hospital


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!

Sunday, July 19, 2009



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.

Sunday, July 05, 2009

so far this is what I know...

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!

Saturday, July 04, 2009

Another Adapt & Overcome moment from the Copley's



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

video

Visitors from Omaha Childrens Hospital



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!

Tuesday, June 30, 2009

June 30, 2009







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!