Father we pray for Kieron, addicted to drugs for about 5 years now aged 17, and causing many problems.  He is our ministers son and it is affecting both his and his wifes health, as he lives at home, and has become very violent.  In the name of Jesus cast out the demon of addiction and restore life to what the locusts have eaten.

cancer cure.healings. health.heal lungs,feet.kidneys.long life.grant past requests.dental health Joe,family.

Pray GOD raises me a mile above satan and those used by satan to glorify GOD  In JESUSName..

caringbridge.org/visit/jordanulrich ~AN JORDAN UPDATE~Tests results are in!  Contrary to everyone's expectations; Jordan really IS refluxing: 12% at 4 ph or below.  Most concerning (and interesting) is there was a 2 1/2 hour period of time where she refluxed continuously.  For those who don't know, Jordan had reflux so bad from birth to almost 3 years old that she was having apnea because of it.  At Denver Children's Hospital I hear we STILL hold the hospital record there- Jordan was refluxing then 49%! of the time.  At 7pm on on Friday night they did surgery on her, doing a Thal-Fundoplycation.  Hands down it is still the worst surgery she ever had (including transplant) causing lots of pain and...she woke up during the surgery!  She was awake for about 45 minutes before they noticed it.  THAT took YEARS of counseling!  As the doctors at STL CICU can attest too, it takes a HUGE amount of medication to sedate Jordan.  She came out of transplant about 9:30 am, by 1pm they were having to sedate here.  (NO wonder she and Bradley have such a connection!  They're alike!)So...tomorrow we leave for our 10 hour trip to St Louis.  We have a meeting with Dr Faro at 10:30 am at "Talk".  No one is sure that another Thal can even be done- there is SOME research to subject that reflux makes BO worse- since she's already had a Thal the doctors don't know if another CAN be done.For those who don't know my husband John, he is a college professor.  He also used to work in Washington DC for Congress as a researcher!  Thank God for that!  I promise you that when we meet Faro on Monday he may be slightly overwhelmed, and he'd better have his sources on his research (Ha!) as John now can quote each and EVERY study that HAS EVER been done on BO!  Only one problem...there aren't too many!  There are only about 30,000 people with CF in the United States, add another 10,000 who have lung problems needing a transplant and you end up with a VERY SMALL population.  It's not cancer and there is very little money to do research.  Those of you out there who have already been thru BO may feel surprised as nothing is familiar to you.  That's because the "Theory's" of BO change so frequently and so much.  I may be wrong but to me BO feels like AIDS in the early 1980's.  With AIDS there were many people who actually died from the medication and treatments instead of the disease.  With BO I almost feel as though it akin to throwing everything on the wall and seeing what sticks.  For the doctors out there the study and treatment that I (LESA) am most interested is PHOTOPHERESIS.  It is where the blood is taken out of the body and circulated.  A UV (Ultra Violet) light is then used on the blood, similar to dialysis or a heart lung machine or ECMO.  WHO is doing it is the question, I DON"T know if STL Children's of Barnes Jewish in STL is doing this, it's something to ask Faro about on Monday.I want to clarify one thing.  I AM NOT GIVING UP ON JORDAN!  In 18 years, despite dire predictions I have NEVER given up on Jordan.  Because Jordan has had other things going on besides CF, I have heard that she would survive her open heart surgery (ASD, VSD and Pulmonary Stenosis Repairs at age 2) and really bad lungs ( she wouldn't live past 10!) I always knew that God and God alone is in control of Jordan's life (and death!) NOT me, or Jordan or ANY doctor.  She is in God's hands and always have been!  On the other hand, although I would LOVE to be in "Ostrich Land" I can't be.  One CF mother who long ago lost her CF son said something really profound to me.  She said it was my God given responsibility to prepare Jordan.  As with any child I had to prepare her to live.  Unlike any other child, I also HAD to prepare her to die.  When you child has Cystic Fibrosis you know there is NO cure and that at some point in time they WILL die, you hope and pray that it will be a REALLY LONG, LONG time away.  And like it or not, no matter how hard it is, we don't get to pretend everything it okay and that CF...and its' consequences DON'T exist.  I think we've done a pretty good job with Jordan.  Our motto seems to be "PREPARE FOR THE WORSE AND PRAY FOR THE BEST."  And, if it is as the old adage goes "the Proof is in the Pudding" then it appears we've done as good job.  Jordan is the most down to earth, got it together kid I know.  I worried about telling her she had BO, I shouldn't have.  She calmly looked at me and said, "We knew the odds before transplant...all those statistics and we knew the odds with CF.  I've beaten them so far (and that she has!) and if it's the end of my journey, well, then, that is in God's hands, not ours!"  So...well said.  And foe those of you who don't know Jordan... yep, she REALLY means that!Lastly, when Jordan was in Dallas several years ago and really sick we met another family from Oklahoma.  Jacque became one of my best friends and my heart broke when she lost her 8 month old baby Maize.  She just had another baby, a sweet little baby boy, and even though the doctors had assured her that what Maize had was NOT genetic, this baby has it too.  Once again she is back at Dallas Children's Hospital, scared to death, I'm sure.  I told her I would post her baby's Caring Bridge site here.  Please visit it and let Jacque and her husband Willie know that you are out there praying for their baby Braxton and their family.  It'scaringbridge.org/visit/braxtongene We will be in STL for an undetermined time, PLEASE keep Jordan in your prayers.  PLEASE ask you churches to put Jordan on their prayer list.  Check back here for updates as we get them.Thanks for all your thoughts, prayers and support.LESA 

Please Pray For Jordan Lee Ulrich!  She is almost 19 and has Cystic Fibrosis.  This is the latest post on their caringbridge from her mother Lesa dated June 1st.  If you would like to read more about Jordan you can visit her site at caringbridge.org/visit/jordanulrich  Thank you for praying!PLEASE PRAY FOR JORDAN TONIGHT!Jordan is in St Louis tonight.  She went (late because of St Louis scheduling) for her one year evaluation.  Her PFT's today did not turn out very well, we are waiting on the bronc tomorrow to see what happens.  As it stands now, it appears that Jordan has BO. (Bronchiolitis Obliterans Syndrome)  News to me- and those of us who have always relied on what the FEV1's on Pulmonary Function Tests mean- I now know that that little number under what is called a "FVF 25-75%" is THE one that diagnoses BO.  If it goes down more than 70% from the patient’s baseline, than it is by default BO.  Jordan's numbers went from 3.81 in Feb. (2008) to 0.61 today!  The bronc really doesn't add anything, it just determines if there is acute rejection and/or as well.  So...tomorrow at 7 am Jordan goes in to have her bronc.  WE haven't told her about the Bo situation mainly because we want to know for sure before we say anything and because her best friend Heather died last week devastating Jordan.For those of you not familiar with BO, it is what everyone with a lung transplant eventually gets- and what is ultimately what ends their life.  The body rejects the lungs and the lungs start tunneling and collapsing the tunnels of the lungs from the bottom up.Please, please pray for Jordan!  She knows that her PFT's are not good so she is worried about tomorrow.I know some scary things about BO and some okay things.  It appears that it can be really fast or not so fast.  I personally know people that experienced both.  Does anybody out there know anything about BO?  If so, please share!LESA  

Lena (Stout) Clay has been in St. Louis awaiting a lung transplant for several months.  The fact that she had a liver transplant over 10 years ago, has made finding a donor more difficulty because of additional antibodies.  Lena's mom (Callie) called this morning and Lena is currently in ICU at Barnes on a ventilator.  The doctors have told them that if she doesn't get lungs, she probably has about two weeks to live.   Please pray for Lena and her family, knowing that God has the perfect plan and for the doctors to have devine guidance and wisdom as they direct her care.

Please be praying for wisdom for the doctors, Steph and Roy. Steph is taking Wesley to see his CF Doctor from OKC today. (He comes to Tulsa twice a month.) Wesley is still not able to get over his cough and has been running a fever. He has already been on an anti biotic and it’s just not working. Thanks for your prayer.

Wesley is doing much better since being on the antibiotic however his cough is still hanging on.  Once you've been the parent of a child with CF for awhile you learn to hear the difference between the sound of their regular everyday CF cough and the cough they get when something else is wrong.  We’ll talk to the doctor next week and get another culture done if we don’t see improvement over the weekend.  Please pray that this antibiotic would be affective in getting rid of any infection that might still be lingering so that he doesn’t have to do this over again.