Newsletter Archive

Sophie Newsletter December 1995-The Diagnosis

The Sophie Newsletter

December 1995

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Photo by Matt Feikes


 Wow, what a year!  Most if not all of you received our June newsletter, so I’ll just give you a quick briefing of the first part of the year.

In March we went to Mayo and Sophie, Rick and I were tested.  After 8 days, many tests, and much waiting around the top “nerve doctor” diagnosed Sophie as a child with Congenital Sensory Neuropathy Type II.  This is considered a hereditary disorder, though there is no family history on either side.  We didn’t learn much new, and Mayo’s advice centered around prevention of injury.  Sophie feels little to no pain, is motor-skills delayed, and has just started to say some words.  she is a delightful 2 year old (our Christmastime kid!) that continues to surprise us!  Though her speech skills are coming slowly, she can let you know how she feels and what she wants easily.  She is quite the charmer!

In April Sophie’s namesake (my grandmother) passed away.  She was a very spunky lady who we are so thankful was able to see our Sophie for a short time.  Great-gramma Soph was a big fan, worried along with all of us, and we feel is now little Sophie’s special guardian angel.  We miss her.

Grandma Sophie with Sophie and Jody  Summer, 1994

Grandma Sophie with Sophie and Jody
Summer, 1994

In July Sophie started additional physical, occupational (read fine-motor skills,) and Speech (read feeding skills) therapies at Dupage Easter Seals (DES.)  After meeting and evaluating Sophie, everyone there wanted to see her twice a week.  She is currently seen twice a week for speech and once a week for P.T, and O.T.  (We’re thinking of putting up a cot at the center!)  She still sees her original P.T., Diane two times a month.  DES is well known in the western suburbs for their superior services — and so far we have been very happy.  We are currently looking into an electrical stimulation program (using low-levels used at night designed by Dr. S. Pape of Toronto,) which will take us to Toronto for 2-3 days, and followed by DES (they are a certified center.)  This type of procedure may be considered experimental (read battle with the insurance company,) for Sophie, but has been proven to help strengthen muscles in Cerebral Palsy and hypotonic kids. 

We received notice from the National Organization for Rare Disorders (NORD) that 5 other families have registered with them with this disorder.  Like we have said- Sophie truly is “One in a Million!”  And speaking of “One In A Million”…

The One In A Million Kid age 2, Fall 1995

The One In A Million Kid
age 2, Fall 1995

The first fundraiser (done locally by our neighbors and good friends, the Lemanskis/Kohlrus’,) was an incredible success!  Friends, neighbors, teens and strangers all helped with collections on October 28th to mark the Points of Light Foundation’s Make a Difference Day.  What an experience we’ll not soon forget!  Unfortunately it came up fast and we weren’t able to contact everyone — the follow up letter from our friends in Oak Park/River Forest was the second attempt.

We are so very, very humbled by the outpouring of support for Sophie.  It is an awkward position to be in, but everyone has been so generous and kind.  We have learned a very  important lesson of life– the love of family and friends (and even strangers!) is so very precious and can make wonderful things happen!   As our friends the Days said in a card “look out, Massachusetts, here comes Sophie!”  Massachusetts is where we’ll be headed in late May to the Option Institute for special training for an at-home early learning program.  Thank you all!!  (Who says my traveling days are over?!)

It is our greatest wish that the “One In A Million Fund” becomes so big we can make it a foundation that can help other families who have children with extremely rare disorders.  (I think I have found my new destiny!)

Rick is still doing his individual financial planning along with a switch of jobs into Long Grove Trading Company, a broker/dealer whom he has worked closely with for many years.

I’m at home with Soph — she keeps me hopping with her various appointments, therapies, and playgroups.  Our “alien child” never ceases to amaze us.  That nick-name was given to Soph by me after a hard day.  She just isn’t like the rest of us, and if you keep that in mind, she is incredibly fascinating!  Life is a constant adventure here!

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In closing, we’d like to tell you we feel like George in the movie, “It’s A Wonderful Life.”  Clarence, the angel sends him this message,  “Remember, no man is a failure who has friends!”  and his brother toasts, “To George, the richest man in town!”  In the many ways you have touched our lives we feel especially enriched.

Please feel free to call us and ask any questions you may have, no question is too dumb or awkward for us.  It just may help us with an idea for the future.

Merry Christmas, Happy New Year!  We love you all!!

Jody, Rick and Sophie

(We apologize for the length of this letter… you’d think it would be shorter with our newsletter in June!)

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