so you must know a lot about cerebral palsy, right?

Nope.

My MAEd is in special ed, but my concentrations were learning disabilities and autism. I taught special education for four-ish years, but the preschool I was at focused on kids with developmental delays and fetal alcohol syndrome and my middle and high school teaching experience was mostly to kids with learning disabilities, ADHD, behavioral/emotional disturbances, and mild intellectual disabilities.

I'm not incredibly familiar with brain injuries or abnormalities. Physical disabilities aren’t a world I know well, though I technically would be classified by some medical professionals as having a mild degree of physical disabilities in my hands due to damage for rheumatoid arthritis. And my experience with people with intellectual disabilities is limited.  (Learning moment for today: “intellectual disability” is the new term for what we used to call “mental retardation.”)

So what outcome are we looking at for Zoe Amanda? Some degree of physical impairment with a possible side of intellectual disability.

(Can you tell from my metaphor that I’m hungry? Planning for this baby has me wanting to stress eat without the justifiable excuse – It’s for the baby! – for it.)

(Though, considering that I gained more than I should have with my two pregnancies, perhaps that excuse wasn’t so justifiable then either.)

We’ll be setting up an appointment soon with one or more medical professionals to review Zoe Amanda’s MRIs, but the three top pediatric neurosurgeons who have already seen them (before we knew anything about her) have each confirmed that the range of possibility is wide for her. On one end of the spectrum, she could be in a wheelchair and have mild-moderate intellectual disabilities (as a point of comparison for you, most people with Down syndrome who have intellectual disabilities fall in the mild-moderate range). On the other end, she could have typical cognitive functioning and a limp.

Here’s a good link describing CP, and I think the liberal use of “sometimes,” “different,” and “may affect”/”may occur” show well how varied CP outcomes can be. The root of CP is always in the brain, caused by injury or abnormalities that occur in utero, during birth, or in the first two years of life. Zoe Amanda was born at 30 weeks gestation – that’s 10 weeks early – and while lots of babies with CP are preemies, recent research indicates that the brain issues could cause the prematurity or the prematurity could cause the brain damage. It’s one of those, “which came first, the chicken or the egg?" sort of things.

(And now I’m hungry for chickens or eggs.)

We know that Zoe Amanda’s CP is caused by several small areas of periventricular leukomalacia (PVL) that are spread out in her brain.

Peri-what? you say?

Here’s a link for you other research-loving nerds, but my best description is that she has small areas of dead or underdeveloped brain tissue. The fact that they’re small instead of big and spread out instead of all concentrated in one area could be a good thing. Or maybe not. Basically, brains are complex, and a small boo-boo in a crucial spot can affect someone just as much as a big boo-boo in a less vital area.

We’ll know more after reviewing her MRIs with people who know what they mean, but the best indicator of how she’ll develop is how she develops throughout her preschool years. Right now, she’s responding well to caregivers and, other than some muscular tightness in her upper thighs, seems to be developing typically so far; she’s only three-and-a-half months old, though, so only time will tell what the outcomes will be for her.

In other words, right now we have a diagnosis; we won’t have a prognosis until Zoe grows more and shows us what she can and can’t do.

For now, we’re trusting God with the unknown, and we’re thankful that He has called us to adopt so that “having a family” is one thing she can do.