Ephesians Week 6

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 Ephesians 5   5  1  Follow God’s example, therefore, as dearly loved children   2  and walk in the way of love, just as Christ loved us and gave himself up for us as a fragrant offering and sacrifice to God. 3  But among you there must not be even a hint of sexual immorality, or of any kind of impurity, or of greed, because these are improper for God’s holy people.   4  Nor should there be obscenity, foolish talk or coarse joking, which are out of place, but rather thanksgiving.   5  For of this you can be sure: No immoral, impure or greedy person—such a person is an idolater—has any inheritance in the kingdom of Christ and of God. [ a ]   6  Let no one deceive you with empty words, for because of such things God’s wrath comes on those who are disobedient.   7  Therefore do not be partners with them. 8  For you were once darkness, but now you are light in the Lord. Live as children of light   9  (for the fruit of the light consists in all goodness, righteousness and truth)   10  a
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NF clinic tomorrow...

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When my youngest son was 3 months old, I heard the word neurofibromatosis for the first time.  It wasn't until he was 3 years old that he was diagnosed with having it.   Now, he is  7 years old and we are dealing with a plexiform fibroma by his spine and a cyst inside his spinal cord. 

What is NF? Neurofibromatosis 1 (NF1) is the most common form of NF, affecting one in every 3,000 births. It is one of the most prevalent genetic disorders and the most common ofthe neurocutaneous disorders (conditions that affect both the skin and nervous system).  NF1 is characterized by pigmented spots on the skin (café-au-lait spots) and tumors that developon nerves anywhere in the body. In some cases, tumors can arise in the brain or on the spinal cord. The disorder also can cause non-tumorous complications such as learning disabilities – which affect up to 60% of all individuals with NF1 – as well as bone or skeletal abnormalities and certain cardiovascular defects. Neurofibromatosis encompasses a set of distinct genetic disorders that cause tumors to grow along various types of nerves and, in addition, can affect the development of non-nervous tissues such as bones and skin. Neurofibromatosis causes tumors to grow anywhere on or in the body. Plexiform neurofibromas grow diffusely or as nodules under the skin surface or deeper in the body. They may be present from birth, but not initially be noticeable. Plexiform neurofibromaas can develop in any part of the body and tend to grow and intertwine with normal body tissues. They have approximately a 10% chance of becoming cancerous.  If you need more info on NF... click on this link- /NF1-Brochure.pdf
 
Tomorrow we go see the  NF1 specialist in Atlanta and I believe in all of the South East, Kim Uhas from the Scottish Rite Division of Medical Genetics. Astonishingly enough, she is not a doctor but a nurse practitioner. She is so much in demand that there is a 5 or 6 month waiting period in order to see her.  Please pray that we get a good report and that she is pleased with how John-Michael is doing.

Comments

  1. KathleenMarch 28, 2011 at 8:41 PM

    Will be praying, Rachel! I know the only way you have been able to get through this is because you have placed sweet John-Michael in His loving hands!

    ReplyDelete

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