Saturday, September 29, 2012

holding a miracle (on Zoe's evaluations, possible outcomes, and role in connecting two other children to families)

Our girl is a miracle.

Really, she is.

You can read about what the neurologist had to say about her expected outcomes here. That link goes to my friend Georgeanna's blog. Their family is adopting a two-year-old girl with Down syndrome and some health needs from Taiwan, but they first considered adopting Zoe. After they realized it wasn't meant to be for them to be Zoe's family, they were the ones who contacted us about her.

They are knit into our lives in a way I never thought would happen back when G and I were in Miss Dixie's Bible study group a few years ago.

Here's an excerpt from Georgeanna's blog about what the neurologist had to say about Zoe, then called Jesse (but also, for brief periods, called Adelyn and then Hannah Brooke by families who briefly considered her to be theirs but then determined that God was not leading them to adopt her):
I don't remember exactly what he said, but I CLEARLY recall the words "devastating brain injury". He went on to explain (as gently as he possibly could) how things might be for us. We were looking at a child that would probably never walk, maybe never talk, probably struggle with sleep/wake patterns and incontinence. He expressed a concern for the possibility of behavioral issues and all of the care she might need -- things he felt I needed to seriously consider. He not once said anything unnecessary or hurtful, and he never came across as judgmental of our desire to adopt -- he was just stating the facts as he saw them. I could tell he was trying to be positive and careful not to crush my spirit, but I could see the concern in his eyes. At the end of the appointment he walked me out and hugged me, telling me how much he appreciated my heart for these special kids and he wished me all the best.
That neurologist who reviewed Zoe's records then is the neurologist we see now. The one who gave us this report. The one who later said he was surprised by her new MRIs and admitted that no medical reasoning could explain how well her brain is doing.

We still don't know 100% what her outcomes will be, and we won't for a while. Usually, age three is the point at which kids with her kind of brain damage are old enough to really guess at their long-term outcomes. I can tell you, though, these wonderful tidbits from her developmental evaluation:

  • Typical nonverbal problem solving skills (no delays at this point)
  • Typical receptive language skills (no delays at this point)
  • Typical expressive language skills (no delays at this point)
  • Typical cognitive development (no delays at this point)
  • Typical adaptive/self-help skills (no delays at this point)
  • Typical-to-advanced social-emotional development (no delays at this point)
  • Significant delays in gross motor skills (rolling, sitting, walking, climbing, etc)
  • Mild-moderate delays in fine motor skills (using fingers and hands)

We knew she would be most affected in the physical realm. By all medical reports, it would have been crazy for us to expect no delays in other areas. 

Those other delays might show up eventually. Or they might not. 

As for her physical impairment, the pediatrician conducting Zoe's developmental evaluation shared that "while the physical delays will mean that she'll reach milestones on her own timeline, I don't see any reason why she shouldn't be able to walk eventually." 

Y'all.
(For those of you who don't speak Southern, "y'all" can serve as a stand-alone phrase that roughly translates to: "seriously, you ought to think about what I just said or what I'm about to say.")

"I don't see any reason why she shouldn't be able to walk eventually."

The reports were pretty certain that handicapped accessibility would be an eventual need for our family if we adopted Zoe. One reason we chose this house was for accessibility for Zoe. We considered putting Zoe in what is now Robbie's room, but you have to navigate a few turns to enter the room, each tight enough to be difficult to maneuver in a wheelchair. 

Now? That's probably not an issue, though her physical abilities will probably never be a strength of hers. She won't be an Olympian, but for now it looks like walking will be something she does in time. We'll see.

God is in the miracle department, and so far, Zoe is living the miracle. We were prepared to love and parent her, regardless of her needs, but it is a joy to realize that her life will probably be more typical than not.

And about those families who considered adopting Zoe enough to name her before they determined that they weren't at peace in moving forward? Well, one adopted a daughter named Adelyn now, and here's Brooke's beautiful post about a conversation with their doctor about Adelyn's neuropathology. The other is that same friend Georgeanna, whose family is adopting their sweet two-year-old girl from Taiwan.

That's another reason that Zoe is a miracle. Who but God would take one orphan with special needs and use her story to bring her home to a family and to bring two other families to children in need in the process?

I love getting to hold our sweet miracle every day, thanking God for what He has done in all of our lives in 2012.

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