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kkrb21499

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kkrb21499   in reply to kkrb21499   on

About kkrb21499

The genetic test for CF that was done on my children all came back good. Ryan, my middle son as one gene mutation, but it is an unknown mutation. It is a CF mutation, but not one of the main two that cause cystic fibrosis. We will have to wait and see if he shows signs later of the disease, because I am A-typical and only have one gene mutation. I know that sounds really complicated, but if anyone is geneticist, his mutation is:

CFTR c.-893_-891delTAT

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kkrb21499   in reply to SysBot   on

What's on your heart and mind today?

 in response to Need_yeshua...   That was great! I love Joyce Meyer and I think I really needed to hear that lesson today. It is amazing how God knows and provides what I need!
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kkrb21499   in reply to SysBot   on

What's on your heart and mind today?

We were just notified that my Mom's father is in ICU in Chattanooga and we need to find a way to get her there before he passes away. Is there a program that helps with that sort of thing?
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kkrb21499  

Sweat Test

I am a little anxious this evening because my children are having sweat chloride tests in the morning. For those of you not familiar with Cystic Fibrosis, sweat tests are the standard tests performed to identify CF. Because I have one mutation, we are testing the kidos tomorrow to see if genetic testing will be needed. If the sweat test comes back high, we will do the genetic test to see if the kids have one or two mutations. I pray for the best possible outcome, and for safe passage to my doctors office tomorrow. I hope you all have a good evening. Also, if you have some info on working from home jobs that are real and don't require an abundance of upfront money, please let me know.

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kkrb21499   in reply to kkrb21499   on

About kkrb21499

 in response to Starshine...   I am elated that you showed me this website. As a future teacher, and current volunteer at a public school, I have witnessed many times that children have been without glasses and supplies desperatly needed to be successful in the classroom. I am going to forward the website address to the teachers that I know immediatly that truly care about the wellbeing of their class, but are not in the financial shape to supply the needs themselves. Oh yeah and I can get some of my meds too. Thank you !! lol
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kkrb21499   in reply to SysBot   on

What's on your heart and mind today?

 in response to Schmidty...   Thank you and bless you.
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kkrb21499   in reply to SysBot   on

What's on your heart and mind today?

I hope that everyone had a blessed Christmas. We have been given custody, between my parents and my husband and I, of three additional children. A 20 month old, a four year old and a six year old. All little girls and all full of joy and wonder. Our Christmas was blessed with these additions, even though times are tough and I am ill, we feel that it is our place to do our best four these children until their parents are in a better place and are able to do for themselves. I pray that it soon, but if not- we now have six children instead of three. More to love. God Bless You All!!
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kkrb21499   in reply to Makeawishorg   on

About Makeawishorg

 in response to babyelephant1968...   Blessings to all.
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kkrb21499  

About kkrb21499

StudentAbout kkrb21499

posted 1 hour ago (modified 0 minutes ago)

I am a 34-year-old very sick Mom.  I was diagnosed in 2006 with Interstitial Lung Disease and Pulmonary Fibrosis, after an open lung biopsy showed fibroid tissue in my lungs and some lymph nodes in my chest.  After two years  and a ending up on hospice and briefly, the Lord fit for me to begin to improve. For the next couple of years it seemed to be stable except for a few bronchial infections that did not clear and a couple of bouts with pneumonia - something that had always landed me in the hospital a couple time a year. 

Let me back up 34 years.  I was born in Garland, TX in 1976 with sever club feet.  The doctors said that I would never walk, but because my Mother is and Grandmother  was  determined and stong, steadfast, and hardheaded; failure was not an option.  Not for me, and not for my doctors.  My mother was an athlete and played basketball up until her sixth month of pregnancy in a traveling league.  (She retired from teaching after breaking her arm when I was in the 4th grade in the gym and 11 surgeries later they told her she couldn't Coach - she was done) The sports doc for her injuries, and later Dallas Cowboy's Doctor, Vandemeer and Snoots began working to manipulate the correction of the feet .  Then came the pneumonia.  I am sure you can guess that it was associated with anesthetic.  A common problem with putting anyone to sleep is a risk for pneumonia and I was a baby having procedures to correct a major malformation from birth until I was 24.  I have had bone graphs from both hips and  partial fusions at this point.

Back to 34- May 2010

My doctor comes in the room a little more worried that normal.  Of course I am a basket case because I know something isn't right.  I have been sick now since childhood.  I have chronic intestinal issues. I can't go to the restroom! I have pneumonia left and right and this time, it won't respond to antibiotics.  They have told me that I have three gram negative bacteria in my sputum and they want to do some test called a ....

SWEAT CHLORIDE?  WHAT? and a GENETIC TEST?  But I am 34 and I have three children and I have all of these other things!  and but and but......................

I am sure you have guessed by now that I have Cystic Fibrosis.  Atypical in that I have one mutation in stead of Classic, with Intestinal and Pulmonary Manifestations.  I have pseudomonas that we are having a majorly hard time clearing. I have medical expensing that are eating my family alive.  I have no idea what kind of resources are out there because I have never had to apply for anything. We are very blessed to have a CF Care Center within 60 miles, but traveling there ill, is still a production.  With gas money, and utility bills, not to mention our children the mortgage we are not able to make it.  I just need to know where to start.  I am a student at LeTourneau University, a PTO Officer, the Band Booster VP, and all of the sudden I can't even pay my cell phone bill to talk to my doctors.  I am scared and helpless. 

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