Welcome all my friends and family. To get started, go up to the top right corner and click on sign in. There you can create a new user name and password so that you can join in on disscussions and respond to news. I hope you enjoy my site, lots of love, Connor :)
Click on picture below for News about Connor's meds and treatments...
Click on the photo below to see our Ice Storm pics. It was minus 5 today, so don't let the sunshine fool you into thinking it was warm.
Click on the photo below to hear the News and see all our Christmas pictures and more!!!
Click on the photo to hear about Thanksgiving and see Thanksgiving pictures!
Click on the picture below to hear Connor's not so good news :(
Click below to hear Mason news!
Click on the picture to see MANY new pics from all the places we went like Nauvoo and more!
Click on the photo below to see what the money raised for the
GREAT STRIDES WALK helps to get done...Soon A CURE!!!!!! :)
Connor just turned 3!!! Click picture above to see photos!!!
(Click on picture below to hear about our trip to Winter Quarters and see pictures!
Click below to hear Connor's song.
Click below on the picture to see Connor's Video Montage.
Click the play button to hear a song a teenager wrote about Cystic Fibrosis. I will post the lyrics at the bottom of this page. The song is called "65 Roses" which is what most kids say that can't say Cystic Fibrosis. And that is how the Rose became the symbol of CF.
A THANK YOU FOR THOSE WHO HELPED SUPPORT "CONNOR'S CREW" FOR THE GREAT STRIDES WALK ON MAY 13th, TO HELP FIND A CURE FOR CF!!! "CONNOR'S CREW" RAISED OVER $3,000!!! THE WALK RAISED OVER $180,000 THERE, AND MILLIONS NATIONWIDE!!!
Welcome to Connor's Page. It has been provided to keep people who love him updated about our little one.
Hi, I am Connor John Schriever. I was born on October 18th, 2004, in Liberty, MO. My mom, dad, and I are living here in an apartment above grandpa and grandma Schriever's house, so my mommy can stay home while daddy works hard in Law school. When I get bigger I will take over the site, but for now my mom and dad will fill it out.
I have Cystic Fibrosis (CF) There is more information below or check out the link. We found out when I was three months old. It was very sad news when we heard what it was, but my parents are strong and love me, and will do whatever it takes to help me with it and keep me as healthy as they can. I get breathing treatments daily, as well as my Vest. I also take extra vitamins because I have trouble absorbing them, and I take Zantac to help control my stomach acids so my enzymes that I take before each meal will work better. My mom says that if we do all this every day, I will feel better and be heathier longer. I love both my parents for being so strong and taking care of me! I am so glad my mom gets to stay home and play with me, but still am very grateful for my dad who is working hard in school, so he can take care of the family and the cost of having a child with CF. I love them both so much, and the rest of my wonderful family, Grandparents, Great-Grandparents, Aunts, Uncles, cousins, Great-Aunts and Uncles, extended Cousins??? And friends!!! I love you, and hope the best for you! I miss you all and can't wait to see you again! I hope you all enjoy the site, since we live so far away, we can stay close through pictures, video clips, and news about me!
We found out that Connor had Cystic Fibrosis when he was about 3 months old. It was devastating news. He is our special little boy and he has this for a special reason. He is a fighter, I can already tell. He is the happiest baby I have ever seen.
What is Cystic Fibrosis?
Cystic fibrosis (CF) is a genetic disease affecting approximately 30,000 children and adults in the United States. A defective gene causes the body to produce an abnormally thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. These thick secretions also obstruct the pancreas, preventing digestive enzymes from reaching the intestines to help break down and absorb food.
People with CF have a variety of symptoms including: very salty-tasting skin; persistent coughing, at times with phlegm; wheezing or shortness of breath; an excessive appetite but poor weight gain; and greasy, bulky stools. Symptoms vary from person to person due, in part, to the more than 1,000 mutations of the CF gene.
The treatment of CF depends upon the stage of the disease and the organs involved. Clearing mucus from the lungs is an important part of the daily CF treatment regimen. Chest physical therapy is a form of airway clearance done by vigorous clapping on the back and chest to dislodge the thick mucus from the lungs. Other types of treatments include TOBI® (tobramycin solution for inhalation), an aerosolized antibiotic used to treat lung infections; Pulmozyme®, a mucus-thinning drug shown to reduce the number of lung infections and improve lung function; and azithromycin, an antibiotic recently proven to be effective in people with CF whose lungs are chronically infected with the common Pseudomonas aeruginosa bacteria.
According to the CF Foundation's National Patient Registry, the median age of survival for a person with CF is in the mid 30s. As more advances have been made in the treatment of CF, the number of adults with CF has steadily grown. Today, nearly 40 percent of the CF population is age 18 and older. Adults, however, may experience additional health challenges including CF-related diabetes and osteoporosis. CF also can cause reproductive problems - more than 95 percent of men with CF are sterile. But, with new technologies, some are becoming fathers. Although many women with CF are able to conceive, limited lung function and other health factors may make it difficult to carry a child to term.
More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene. An individual must inherit two defective CF genes -- one from each parent -- to have CF. Each time two carriers conceive, there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the CF gene; and a 25 percent chance that the child will be a non-carrier.
.."65 Roses" Lyrics.. Verse 1: What is life expectancy, what a way to phrase a question/ What kind of answer should return the truth, convey the message// Is it, equality the same end for every person/ Is it sovereignty a giving God and living with purpose// Is it only shall the strong survive and then will end the weak/ Or a dog eat dog world, take advantage, turn the cheek// How bout living out your dreams and express it through a poem/ Know what you expect out of life and you can gain the gold// Well for a family of an infant diagnosed to comatose/ It..s journey down the pathway to fight and know the ropes// Each living soul is different like a fingerprint..s identity/ Each body..s made a little different, singing it..s own melody// Embedded in the DNA, where the twisted strands dance/ I wish I guide the way and hold each little one..s hand// I..ve been there before, and I know the way now/ Like a tourist with a map and pamphlet, got it laid out// Chorus: Life loves me, life loves me not it goes/ See the beauty in a flower when I..m pulling on the rose// Prick a fingertip, bleed a bit, from trying to hold it tight/ I want a year for every petal, still alive at sixty-five// Verse 2: Can life be re-paid, can life be reimbursed/ Get the tears back you cried for every time you felt the hurt// What about medical bills, hospital trips, doctor visits/ Time and time again hearing results that weren..t worth a listen// But you have to, hear the news for what it is/ Could do damage to your ears, or it might mend a heart thats delicate// A life-long relationship with medical technology/ Feel like the drugs and machines should owe me an apology// Where to aim to blame, if only that I knew/ For the one who has the power, has more love for me than I do// Not in measurements of self-esteem or the image in the mirror/ Not in a sense of being vein but in a sense of being clearer// Unconditional, not limited by any means/ Break the strands and molds that try to pigeon-hole me please// Unconventional, I..ll be damned if I don..t defy/ Disease, I want seeds in a family that can multiply// Chorus: Life loves me, life loves me not it goes/ See the beauty in a flower when I..m pulling on the rose// Prick a fingertip, bleed a bit, from trying to hold it tight/ I want a year for every petal, still alive at sixty-five// Verse 3: Will God give me the chance to say goodbye one last time/ Gather friends and family members, single file in a line// Apologize for neglecting, for always second guessing/ I should have nurtured more relationships are such a blessing// Hear a word from a friend that makes you smile when it hurts/ Get better treatment from your wife than any certified nurse// And a rock to stand on, not just in Christ but in family/ Break their backs just to help you hold steady handling// (1,2...) I..m an angel in waiting/ Growing wings out of my spine to take flight navigating// When it comes time, give em pounds & daps I..m outta here/ Take the one and only flight up, blast into the atmosphere// Look next to me, I..m not flying all alone/ I..ll take the long road home where the psalms unfold// And be the oldest man living till the day I pass away/ Telling cystic fibrosis that it lost again today// Chorus: Life loves me, life loves me not it goes/ See the beauty in a flower when I..m pulling on the rose// Prick a fingertip, bleed a bit, from trying to hold it tight/ I want a year for every petal, still alive at sixty-five//
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Click below to hear Connor's song.
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