Tuesday, December 28, 2010

The Backstory

Mimi was born about 8 weeks early, in NICU for 9 days, and on oxygen for her first few months of life.  While she seemed like a normal, happy, healthy baby, we began to see a few issues here and there.  The first problem came with her ears.  We discovered she was legally deaf as a result of her ears not forming correctly.  A minor surgery was able to fix the problem, and she hears over 80% now.
The next issue came when she began to walk.  She only walked on tip-toe, and her doctors told us she just wanted to be tall like her brother.  We did worry, but we trusted that she was fine.  It was not until her kindergarten year that a fellow parent  told me that her son had the same problem and it could turn into a major issue.  Mimi was already purely walking, running, and jumping on her tip-toes.  We took her back to see the doctor who referred us to Mindy Siegal, a pediatric orthopedist. Mindy recognized that she had some muscle and tendon problems, and idiopathic toe-walking.  She had compensated so much with the other parts of her body that it had begun to curve her posture, bow some bones, and had stunted her growth.  The doctor immediately had leg braces made and put Mimi into weekly physical therapy.
Unfortunately, Mimi has not been making the degree of progress that they had hoped, and Mimi will begin serial casting on the 30th (day after tomorrow).  We are hoping that in this process we can avoid botox treatments or surgery.  The serial casting is done over a period between 8-16 weeks. She will get a new cast every seven days, each time changing and bending her legs.
All of this was difficult to swallow, but nothing prepared us for the news that our insurance was only going to cover 50% of her care.  We were suddenly in debt by over two thousand dollars, just for the two pairs of braces she already had made.  We were also informed that there were copays that we were supposed to be paying, and the cost was going to go up with the serial casting this week.
Needless to say we were pretty shocked.  After looking into several options, and being told over and over that it was unfortunate that both my husband and I worked (because Medicaid would pay for all of it), and because her braces had to be specially made, we were sunk.
It seemed to us that we needed to fundraise or jump ship.  Since I don't swim very well, we decided to fundraise.  Hence the title "Music for Mimi."  More on that tomorrow.......

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