Wednesday, May 19, 2010

What's in a diagnosis?

The first diagnosis I received was at 33 weeks pregnant. My baby was not growing properly, Dr. said it could be "Intrauterine Growth Retardation". I was immediately sent for a sonogram which showed that my daughter was growing fine but I had "low amniotic fluid", therefore I would be induced at 34 weeks. Mary was born 6 weeks early. This was 10 years ago.
After delivery, Mary was hospitalized for 2 weeks for the usual premature issues. Underdeveloped lungs, jaundice, body temp. control. On Mother's day, May 2000, I finally brought her home. Even though she did not reach many milestones by 3, 4, 5, months, I passed it off, figuring she was premature and would catch up. Her pediatrician at the time was not worried either. At a birthday party my older daughter attended, someone informed me that since she was premature, the State of Florida had a program called birth -3years and they would evaluate her for free, as well as cover any expenses for premature birth related issues . I went into that evaluation with all the confidence in the world that she was fine. Then came another diagnosis.................

First came, "Developmental delays", and the worst sounding, but least worrisome, "Benign congenital hypotonia" (low muscle tone). I was devestated, I was told of all the things she would struggle with. I immediately went home and googled it all. I didn't know if she would ever walk, feed herself, etc. At 6 months old, we started all the therapies. Physical, occupational, then speech. We enrolled her in a special school to ensure the most help possible. Mary walked at 18 months old, but still didn't talk.

Then at age 2, she had a grand mal seizure. So, after a week in the hospital, we have yet another diagnosis. Seizure disorder. Mary was put on phenobarbital, which turned her into a moody zombie for a year. Finally at age 3, the Dr. put her on a different medication and she woke up. She finally started to talk. She called me Nonny, all her m's were n's and all her n's were m's. It was pretty funny. We were just happy to see her smile and chat. We have not been able to keep her quiet since!

The next few years were a blur of therapy sessions, Dr. visits, testing, evaluating, etc. Mary has had every possible blood test, scans & mri's. Tonsils, adenoids removed, hole in eardrum repaired. It seems there is always something.

1 comment:


although I am not going through all that you are...I can totally relate to that " always something " feeling......