Tag Archives: family

Missing the Man Called Daddy and Paw-Paw

I never dreamed this emergency room visit would be our last. A statement that I have always heard through the years is that “a person never realizes what they have until it is gone”. Well, tonight I completely had a … Continue reading

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Acceptance and the LOVE of Football

  We all want to be accepted for who we are in this life.  Right? As a special needs mom, I want this for my son. ACCEPTANCE. I have never seen him so excited than this very day (other than … Continue reading

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My Kind Of RARE

 Loving someone who is RARE is a precious honor.  I am thankful God has given me the privilege to love two special RARE people in this life.  This RARE condition is a chromosome disorder of the L1cam gene and it’s a … Continue reading

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L1CAM Family

I never thought I would see the day of being able to meet other families that walk in my shoes daily.  For so long I begged and pleaded with God to help me find someone…surely I can’t be the only … Continue reading

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Feeding Tube Awareness

Placing a feeding tube is a relatively simple surgery, but it is only recommended for complex conditions. Tube feeding is a way to provide nutrition to people who cannot or will not eat and/or drink enough to keep their body … Continue reading

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Spastic Paraplegic (SPG1)/Shuffling Gait

Hereditary spastic paraplegia  is a general term for an expanding group of rare genetic disorders characterized by slowly progressive weakness (paraplegia) and increased muscle tone and stiffness (spasticity) of leg muscles. Other symptoms can occur in the pure subtypes including … Continue reading

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Choose Joy!

Brent started off his day today not feeling good.  He has been very quite.  As the day went on, his Aide came today also and he cheered up some.  We have a new Aide and she is doing a wonderful … Continue reading

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