Thursday, December 30, 2010

Family, Developmental Delays, and Doctors - Part 1

I wish I could tell you that we followed what God was leading us to do and everything ran smoothly from there, but that would be far from the truth.  Actually after that came great silence on His part.

Around the time they were transitioning Autumn into our home, some of Autumn’s family showed up, and visits began.  Visits with the birth family are usually very difficult on foster children.  The whole experience is very confusing for them, and they generally come back an emotional wreck.  There were even a few unsupervised visits along the way.  I had a decision to make – worry or trust.  I had to fully believe that Autumn was God’s long before she was ever “mine,” and each time she left, I had to trust that He was with her, keeping her safe.  I had to hold fast to the belief that He loved her far more than I ever could.

I also had to pray for God’s will to be done in Autumn’s life.  I knew what really mattered is that Autumn some day come to know Christ as her Savior.  I prayed that God would place her wherever she needed to be for that to happen.  It’s possible for her to grow up in a Christian home and reject Christ, while it’s also possible for her to live in a non-Christian environment and later come to know Him.

Visits with the birth family were really the least of our problems.  We welcomed Autumn into our home, fully aware that she had special needs that needed to be addressed.  She came with several referrals already in place.  She moved in on March14, and in April she had an evaluation with Early Intervention as well as an appointment to see a neurologist (I’ll call him Neuro #1).

Autumn’s most obvious delay has always been gross motor.  The first referrals were due to weakness in her trunk.  Sitting up unassisted and crawling were a little behind, but walking would be her greatest challenge.  Autumn also had terrible skin problems.  She would break out around her mouth while eating, behind her ears would get so dry that they would crack open and bleed, and the diaper area was the worst.  We had skin creams everywhere!  Autumn was also having sensory processing problems.  She had strong aversions to touch and loud noises, and an obsession with putting things in her mouth.  Autumn was very anxious and afraid of so many things.

We saw Neuro #1 for about 3 years.  He did MRIs, x-rays, a muscle biopsy, and many other tests without coming to a diagnosis – other than the general term of encephalopathy myopathy (a disorder of the brain and muscles).  It wasn’t just that Autumn’s walking was delayed, it was the way in which she DID move that concerned me.  It was always very uncoordinated and she had so little body awareness.  Neuro #1 requested Autumn’s first muscle biopsy – 10 months later, we had the results.  We had hoped that the biopsy would confirm whether or not Autumn had a mitochondrial disorder.  It showed low activity for Complex I as well as the possibility of a Fatty Axid Oxidation Disorder.  Nothing was very clear, and Neuro #1 said we’d exhausted his knowledge base.

To Be Continued…


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