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Text of the page (random words):
ts uncles friends but most of all for her dear sweet mom i put myself in her shoes knowing it could have been me to lose my daughter and how i would be feeling every moment of every day if that were so life would be impossible yet so many people carry this sorrow every single day i love ashley s mom so much she is a wonderful woman so generous and so kind it s not surprising that ashley was who she was at the ripe age of 12 when she left this world behind her i really do wish ashley was blowing out 14 candles had planned a fun party and was spoiled with gifts maybe a horse would this have been the year she d get a horse i couldn t help but wonder i d give anything to be connected to her and her family a different way or simply not to know them at all if it could mean they had ashley back after lulu s preschool we went to pick up balloons her favorite colors blue and purple just like last year 14 rather than 13 london was telling people at the party store that is was ashley s birthday if only they what that meant we wanted to let them go at the donor monument down town but it turned cold and dark too soon lulu and jones let them go to heaven sending each one up with kisses or words of love for ashley we sang happy birthday to her several times that day but no notes were sung as beautifully than from lulu as she let balloons drift up to heaven in the morning i asked lulu what did ashley give you she looked down at her bare tummy and proudly said a scar no lulu what s behind the scar oh a liver we love our ashley happy birthday sweet girl thank you for lulu s perfect liver and happy life no longer being lived in the hospital in chronic sickness or in constant worry by all who love her bless donors and donor families everywhere xoxo video link below http www youtube com watch v gd9t1_x9z9s feature share posted by the house that james built at 1 47 pm no comments labels ashley bday thursday october 13 2011 prima ballerina my little lu started dance about a month ago we are taking with our dear little friend olivia and it s a weekly 45 minute slice of heaven i softly cried through her first class it wasn t too long ago that i wondered if my sick baby would be able to dance one day insert picture of sick lulu in liver and kidney failure or vented and tubed and iv d to the hilltops i count my lucky stars that her transplant did come in time sweet london gets a chance to do anything and everything in life i recently came across this blog that had so many similarities to ours it was uncanny but her little liver didn t come in time i was hysterical in the wee hours of the night when i finished reading ruby s story from beginning to end i thought i was going to have a panic attack my throat was closing up i could hardly breathe the grief i felt for this young mom hit me to my core i spent the rest of the night curled up with london in her crib holding her tight and recounting my blessings i wondered why that wasn t us and what if it was it could have been i was ashamed in those hours that i don t remember all we learned through our trials with london on an hourly or at least daily basis i had begged james to do bedtime with the kids on this particular night because i had just had enough of them for one day my heart ached that i didn t tuck them in read to them sing to them kiss them because i could my sweet children are alive and well and i gave up a bedtime with them something that ruby s mom would die for i cried for our sweet donor ashley s mom and imagined how empty her arms must feel so lessons relearned seeing lulu in the special glory that is hers rather than such a terrible two i thank god she has such a strong spirit it served her well through disease and sickness and i know it will continue to be such an asset for wise beautiful tough as nails lulu love you girl xoxo lizzie posted by the house that james built at 4 23 pm 3 comments labels dance monday september 5 2011 ode to ashley kissing ashley s name on the donor wall ashley lauren maynard can you find it lulu met her livers daddy for the first time this weekend and we loved spending time with him remembering ashley and eating good food london calls him liverdaddy so cute our parents and almost all of mine and james siblings nieces and nephews were at the ceremony and unveiling of the wall it was a great morning i d recommend going to the amazing beautiful monument that is on the se corner of the salt lake library it is spectacular meeting lulu he has known her well through her blog but this was the first time they were able to meet as will lives back east we appreciate his love and concern for london and her health i m sad i missed the opportunity of getting pictures with ashleys grandpa and cousins but are so glad we got to visit with them love you maynard family me and my miracle posted by the house that james built at 7 53 pm 1 comment labels ashley donor wall older posts home subscribe to posts atom search this blog popular posts angels here angels there angels everywhere this beautiful custom piece of art was made by my friend ally christensen it is miss lu asleep in her crib double click to see her big b love being their mum throw up poop and all the day started out ever so lovely a badger brunch at my sister in law whitney s house love seeing my nieces and nephews who i an ode to bob marley every little thing turned out alright life has been extremely busy but beyond good at the badger home despite 2 or 3 er visits for fevers minor illness some weird tube time cousin jeff sitting back sipping a diet root beer and about to have some sunday afternoon entertainment badger style don t worry ashley we had my friend ally http www allybrynndesigns blogspot com create the above picture for both of ashley s parents from the littl 6 43 am listening to bob marley picture least 8 more people in the room draped and doing thier job got the call getting ready to head organ donation facts and fiction be a donor pretty please http organdonor gov donor index htm facts fiction please read http organdonor gov donor index htm how to become a donor ple benefit dinner video from wayman studio http www waymanstudio com let me start by saying i have a lot of time on my hands right now as we have been a lulu s family blogs badger construction inc all decked out 13 years ago the house that james built welcome to liverforlulu blogspot meet beautiful brave tough as nails london aka lulu she s been fighting alpha 1 anitrypsin deficiency since birth it s a genetic disease that causes liver disease and sometimes lung disease later in life she received a new clean healthy pink perfect beautiful liver january 15th 2010 thanks to the generocity of a family willing to donate their childs organs to give life to others she is lulu s angel we thank every person who takes the time to look at lulu s blog i am so happy that many now know what alpha 1 is i am grateful that some may change their veiws on organ donation because of london s life that she s been living with such dignity strength and grace feel free to email me elizabethbarnum at hotmail dot com with questions or comments lulu s liver bff s and other sites we love miss olivia mr patrick super ashley ms shalyse just keep faith yes utah organ donation website and blog alpha one alpha1 biliary atresia liver disease utah liver families miss belle alpha 1 mr charlie super clark miss eden baby gavin miss harmonee mr kai miss lydia miss mackenzie miss maggie mr malakai mr martim miss paige lulu s little friends angel kate this is who lu got her middle name from milo man our cancer friend angel kenz mr chase mr lucas heart friend helping hands in haiti cystic fibrosis ally brynn designs simply sweet become a donor please click here to see how contributors julia the house that james built what is alpha 1 alpha 1 antitrypsin deficiency alpha 1 is a condition that is passed from parents to their children through their genes this condition may result in serious lung and or liver disease at various ages in life for each trait a person inherits there are usually two genes and one gene comes from each parent people with alpha 1 have received two defective alpha 1 antitrypsin genes one defective gene came from their mother and one from their father there are many types of defective alpha 1 antitrypsin genes the most common abnormal genes are called s and z normal genes are called m a person who does not have alpha 1 will have two m genes mm people identified with alpha 1 most commonly have two z genes zz current evidence suggests that there are about 100 000 people with alpha 1 zz in the united states another deficient gene combination is sz although people with this gene combination are less likely to get lung or liver problems than those with two z genes lulu is zz alpha 1 occurs when there is a lack of a protein in the blood called alpha 1 antitrypsin or aat that is produced by the liver the main function of aat is to protect the lungs from inflammation caused by infection and inhaled irritants such as tobacco smoke the low level of aat in the blood occurs because the aat is abnormal and cannot be released from the liver at the normal rate this leads to a build up of abnormal aat in the liver that can cause liver disease and a decrease of aat in the blood that can lead to lung disease the most common signs and symptoms of disease caused by alpha 1 are shortness of breath wheezing chronic cough and sputum phlegm production chronic bronchitis reacurring chest colds eyes and skin turning yellow jaundice swelling of the abdomen ascites or legs vomiting blood from enlarged veins in the esophagus or stomach decreased exercise tolerance non responsive asthma or year round allergies unexplained liver problems or elevated liver enzymes and bronchiectasis alpha 1 has been identified in virtually all populations and ethnic groups it is estimated that about 1 in every 2 500 americans have alpha 1 individuals with alpha 1 may remain healthy throughout their lives early diagnosis and avoidance of risk factors such as cigarette smoking can help prevent alpha 1 from causing disease an estimated 20 million people have one normal and one defective aat gene people with one normal gene and one defective gene for example mz are called carriers james and liz carriers may pass the defective gene on to their children alpha 1 can lead to lung destruction and is often misdiagnosed as asthma or smoking related chronic obstructive pulmonary disease copd alpha 1 can t be diagnosed by symptoms or by a medical examination you need to get a blood test to know for sure alpha 1 is the most common known risk factor for emphysema and copd about 3 of all people diagnosed with copd may have undetected alpha 1 alpha 1 can lead to liver disease the most serious liver diseases are cirrhosis and liver cancer the world health organization who american thoracic society ats and the european respiratory society ers recommend that all individuals with copd be tested for alpha 1 what does your liver do for you how important is the liver the liver is a vital organ without it we would not be able to live apart from the brain it is the most complex organ in the body it has a wide range of functions and acts very much like a factory one of its most amazing features is its regenerative power some 9 10ths of the liver can be cut away and provided the remaining 1 10th is healthy the liver will grow back to its original size the liver is a processor the food that we eat passes into the stomach via the esophagus gullet the food is broken down by the action of the stomach and the small intestine the nutrients from the food are then absorbed into the blood via the vessels in the walls of the intestines these drain to veins which lead into the portal vein which carries the blood into the liver the nutrients are processed in many different ways in the liver this processing of the food is known as metabolism the final products made are used by the body for energy and growth the liver is a manufacturer the liver produces a number of different substances which are vital in order for healthy growth and development for example 1 the liver cells produce substances which assist with the clotting of the blood e g prothrombin 2 the liver cells make proteins which are carried in the blood these have many functions albumin for example helps to control the distribution of fluid in all parts of the body and transports many substances to and from the liver and kidneys to other parts of the body the liver is a storage depot the liver stores energy in the form of glycogen sugar it also stores a number of other substances e g copper iron and vitamins the liver is a controller the liver plays an important part in controlling 1 the correct level of many hormones within the body 2 the blood sugar glucose levels the liver stores glucose in the form of glycogen when there is too much glucose in the blood and releases it when the blood sugar level falls 3 the amount of fluid the body retains and its distribution throughout the body 4 the concentration of cholesterol which it converts into bile salts 5 the action of many drugs the liver is a filter the liver removes many unwanted substances from the body it plays an important role in controlling the harmful effects of some drugs and products of metabolism by changing them chemically before excreting them into the bile bilirubin unconjugated or indirect is produced when old red blood cells break down the average life of a healthy red blood cell is 120 days this bilirubin is carried in the blood stream attached to albuimin to the liver where it is altered into a different form conjugated or direct bilirubin which is then 1 excreted in the bile 2 transferred into the bile which passes via the bile ducts into the intestine and appears as brown pigment in the stool bile is continuously produced by the liver cells mainly by the action of bile salts it collects in and passes out through the network of bile ducts into the intestine bile salts play an important role in the digestion of fats the liver is a defender the liver plays an important role in fighting many types of infection in particular protects the body against infection which arises in the gut with so many different and complex functions it is not surprising that more than 100 types of liver diseases have been identified in babies and children followers blog archive 2012 4 november 1 an ode to bob marley every little thing turned o august 1 january 2 2011 20 november 1 october 1 september 1 august 2 july 2 june 1 may 2 april 1 march 1 february 3 january 5 2010 126 december 4 november 8 october 1 september 6 august 3 july 2 june 6 may 16 april 17 march 11 february 12 january 40 2009 34 december 19 november 10 october 4 september 1 labels 1st birthday 1 2nd birthday 1 3rd birthday 2 abdul 5 adoption 1 alec 1 alpha 1 1 ashley 15 bday 3 beauty 1 benefit dinner video 2 1 benefit part 1 1 chase 1 check up 1 clinic 3 dad 1 dance 1 d...