Friday, June 28, 2013
Taking Zoë to Primary Children's
I recently alluded to the fact that we made a visit to Primary Children's Hospital in Salt Lake City with Zoë.
And it's true...we did. It wasn't easy to go back there. We've popped in several times over the last five years to drop donations off at the front desk. There was one Christmas we took pizza and salad to the NICU and PICU for all the doctors, nurses, and families.
But to go back there again with your daughter, your living daughter you never thought you'd have after losing your first, it was a bitter pill to swallow.
Luckily, this time it wasn't because of an emergency. Vic and I held hands and walked in with our heads held high and our chests out, as if we were preparing to bravely face our doom. Walk into a wall of fire without shame and come out the other side alive.
I won't lie, I saw Vic shed a tear or two. There was a volunteer in the lobby playing beautiful music on her violin. The women at the front desk were so helpful and kind. It is such a sacred place for us. I would be fooling you if I didn't tell you that I expected every other doctor or nurse whom we passed in the hallway to stop and say, "Oh my goodness. It's Lucy's mom and dad." Because that is where our world ended. It is where our angel took her last breath. And it feels strange to walk into that place and not be recognized as an "angel mom". It's like veteran soldiers visiting a war monument and no one knowing or acknowledging them.
But regardless, the reason we were there was to have Zoë's hips x-rayed. I mentioned to the doc at her one year appointment that she isn't crawling. She isn't standing. She isn't cruising. She has never pulled herself to standing position. But she does scoot! She is a scooting machine. Vic calls her a little carpet monkey.
Early intervention came and did an assessment on her a few weeks ago. She is off the charts on her verbal, emotional, social, and fine motor skills. But its her gross motor where the problem lies. She favors her left side and doesn't bear her own weight. Thus, the x-ray to determine what is going on before we start physical therapy next week. (Finally! I've been waiting for July 3 for almost 3 weeks.)
So what did they find in the xray? No hip displacia. Which is good. But the doctor was concerned about her right hip. They told me something about spacicity and casually threw out the chance that she could have mild CP.
"CP? What is CP?" I say.
"Cerebral Palsy," they say.
I tried to keep it together over the phone when they told me this. My head started spinning. What about dance? Gymnastics? Running? How will she keep up with her brother on his bike?
And then the doctor says, "BUT, it could also just be the way she was positioned on the table when they took the xray. It might be nothing."
So the bottom line is this. We will know more next week when the PT comes. In the meantime, I've been working with her on standing and crawling. (I'm having more success with standing than I am with crawling.)
A close family friend, who happens to be a radiologist, is giving me a second opinion TODAY..so I'm awaiting that call.
Deep in my gut I truly feel that everything is going to be fine. She might not walk until she is 2, but I think she is going to be fine. That is what my gut is telling me. She is mobile, she is bright, she is beautiful.
I think we will see a lot of progress with the physical therapy over the next year.
And you know what? After having the worst thing possible happen to you, (your child dying in your arms), the thought of Zoë having a limp her whole life, or never being able to run fast or jump high is something I can deal with. And boy, does it give me a greater admiration for mothers of special needs children--CP, muscular dystrophy, limb differences, you name it.
I will let you know what how the second opinion goes and our first visit with the physical therapist.
Sweet little, Zoë. I love you so!
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