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Karen Lynn Vidra, The Texas Tornado

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My (Perfect) Son Has Batten's Disease: Caleb's Story. (Part Seven)
By Karen Lynn Vidra, The Texas Tornado
Tuesday, October 13, 2009

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"I pray this continues, especially since Caleb's health can turn on a dime."

Elaine Maxwell updates us on what is going on in her family's lives.

Image (C) 2007, Karla Dorman.

Elaine Maxwell here. 

Thought I would do an update, to let y'all know what is going on in our world.

My daughters, Corinthe and Celeste, continue to be busy with their sports (both play fast-pitch softball on the girl's team at their schools) and with schoolwork; as for Caleb Patrick, he continues to enjoy a spate of good health, which is rather unusual for him.

I pray this continues, especially since Caleb's health can turn on a dime.  One minute he's doing great; the next, he's fighting for his life in a hospital Intensive Care unit.  (He has Batten's disease, a neurological condition that causes increasing disability and other serious health problems; death usually occurs before the age of four or five.  That he's lived this long has been nothing short of a miracle.)

Caleb can no longer do anything for himself.  Caring for him is a twenty-four hour job, in addition to caring for the other children.  He is blind and has to be fed, bathed, dressed, diapered.  It is very hard to care for a child like him, a child who needs total care.

I feel we are cheating Celeste and Corinthe out of their childhood; they deserve to have fun, not worrying about their little brother, whether he is going to get sick or end up in the hospital again!

This is why our "Celeste-and-Corinthe Time" is so special; we get to actually spend time away from our son and do fun things as a family.  (During the times my husband, the girls, and myself are out doing something fun, the respite-care team is on the job, providing care for Caleb--and giving us a much needed break.)

I am happy to report that it has been several months since Caleb was last in the hospital.  The last time he was in was because of uncontrolled seizure activity; the doctors have since given him new seizure medication, and it appears to be working.  He also hasn't had any rounds of pneumonia or upper respiratory illnesses, which has been a huge answer to prayer.

I hope this continues to be the case, especially since his medical bills threaten to eat us alive, even with good insurance coverage.  (I just can't imagine caring for a child like Caleb without insurance!)

It is only by God's grace that we are able to get ahead with the bills or pay them on time.  (If we have trouble, then the church helps us, or neighbors hold special events to help raise money for Caleb's bills, which has been a godsend.)

I still don't know what the future will hold for our son, but we are trusting in God to get us through the valleys, in which He has, each and every time.  He is never late in providing for our needs; it is because of this that we put our faith completely and fully in Him.

Well, Caleb's nutrition pump is singing again; that must mean his last feeding of the day is about over.  I will write in here again soon; until then, this is Elaine Maxwell saying so long!  God bless you; He's certainly been blessing us by keeping little Caleb well!

~Love, your friend, Elaine.  :) 


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Reviewed by Carole Mathys 10/14/2009
What a strong family, good update, Karen.
peace, Carole~
Reviewed by Mr. Ed 10/14/2009
I hope this continues to be the case, especially since his medical bills threaten to eat us alive

I truly hope so, too.
Reviewed by kg cummings 10/14/2009
I am always amazed at the love and acceptance of those that have to adjust their lives to include a special needs child. My cousin was born with spinal bifida and I saw this first hand.
Hugs from warm and sunny Florida, Kathy
Reviewed by Rose Rideout 10/14/2009
Sorry I haven't been around too much lately but I am really trying to get everyone back to normal around here. I thank you for your continued updating us. Another great write Karen.

Newfie Hugs are on the way, Rose
Reviewed by Cindy Tuttle 10/14/2009
I pray for all parents who have a child like Caleb.They sure have a hard mountain to climb.Thanks Karen for helping us be more aware of people who live their faith in very challenging situations.

Reviewed by Paul Berube 10/14/2009
Very well done update, Karen.
Reviewed by Felix Perry 10/14/2009
Great update on little Caleb and his family. Well written.
fee
Reviewed by Dawn Anderson 10/13/2009
There is no love like that of a mom. Touching story, Karen.
Reviewed by Karla Dorman, The StormSpinner 10/13/2009
Thank God for loving parents, and for a caring respite team - I couldn't do it. :( Well penned, Karen.

(((HUGS))) and love, Karla.


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