4.12.2011

A Little Background

We found out while I was in labor that Emma was breech. She had turned during the last week. When she was born, it literally looked like Emma was folded in half, with her feet up near her ears. This was a natural position for Emma for the first few weeks of her life. As I look back, I wish I had taken a picture of this for future scrapbooking. Gradually, her feet would come down to her toes.

Emma has never been a good eater. It took her about 3-4 weeks to get back up to her birth weight. She has always spit up frequently and gets uncomfortable while eating. She has never wanted to eat what she is supposed to.
 She starting arching when she was about 3 1/2 months old and it got progressively worse. The arching first appeared when she got uncomfortable eating. Then it got more common and started to occur at times when she wasn't eating. The pediatrician referred us to a neurologist to check into this. She had seen a neurologist when she was 2 months old and that check up was fine; there was no arching at that time. The appointment at that time was partially to help determine whether they thought there might be any injuries that were sustained during her birth since her birth was considered to be "traumatic".

There are a number of disorders that have arching as a symptom and the doctors were very concerned. They were concerned for her weight, but they were even more concerned for her arching positioning.

This brings me to December 15, 2010. We had an appointment for this day for a couple tests. We were not sure at the time, but there was the chance that she would be admitted as an in-patient overnight. As it turns out, we would be there for much longer. I will not drag out these nine long days, but this is how long we were in the hospital for. Prior to this admission, Emma had already had some testing done including blood tests, urine and stool tests, quick scan MRI, head ultrasound, and neurology visits.

During our stay Emma had a full MRI, EEG, EKG, upper GI test, a chromosonal microarray test, more urine and stool tests. There were also visits from speech therapy, physical therapy, genetics, nutritionist, metabolic neurologic, neurologists, and others. They gave her a medication for dystonia, but that didn't seem to help the arching at all.

To this day, all of her tests for disorders have come back negative. She is on omephrazole for reflux and baclofen for her muscle tone.

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