Alphabet Soup

Charlie saw her developmental pediatrician today. He agreed with the rest of her health care providers that she would benefit from ankle foot orthotics (AFOs). I was prepared for and expected that part of the exam. However, I was surprised when more letters were discussed in what is the alphabet soup of Charlie’s health concerns.

In addition to the BPD (Bronchopulmonary Dysplasia) and ROP (Retinopathy of Prematurity), her doctor today discussed PVL (periventricular leukomalacia) and resulting CP (spastic diplegia).

I was caught off guard by the PVL discussion. I responded, “But she only had a grade 1 IVH (intraventricular hemorrhage)!” as if my contradictory argument could change things.

In my comfortable naivete, I thought only babies with hydrocephalus or a grade 4 IVH had PVL. Once her doctor explained things to me, it made sense. In short, PVL is one of many possible long term consequences of prematurity.

The CP part of the discussion did not really bother me. Charlie had been home for a few months when I knew there was an anomaly in the way she moved (she couldn’t). Although, I admit, I was hoping that she would do well enough that we could dodge the CP discussion.

What does this mean for Charlie? Not a thing. Nothing changes (other than her new fancy footwear).

She will carry on with PT, OT, speech therapy, music therapy, and all of her play dates. She will continue to laugh, dance, sing, and explore. She will have to work harder and it will take longer for her to learn to walk than most of her cohorts.

Though, that has been the case with most things for Charlie. Greatness does not happen overnight.

sporty charlie

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About Rebecca Wood

In May 2012, my pregnancy ended three and a half months early due to severe early onset preeclampsia. This is my collection of thoughts and media. It is an attempt to document and discuss our experience of navigating the post NICU world. View all posts by Rebecca Wood

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