Today I took my daughter to the 5/12 doctor visits we have scheduled within a three month time span. She went straight to the scale and pulled off her shoes, backed right up to check her height and picked up the crummy hospital gown and shorts and put them on, though she refused to let me tie them. That resulted in giggles as she walked across the room and her drawers went straight to the floor.
But I also love this expression as she waited for this specialist to see her. Even Lotso slumps over like “again? Really?”
Having a kiddo with Down Syndrome means you often have some medical issues to go with it. We have seen cardiology, orthopedics, endocrinology, audiology, ENT, opthomology, geneticists and many, many visits to her pediatrician, not to mention horrendous labs and X-rays.
But recently we moved. Well, six months ago, but we didn’t get established with this medical facility until 2017. Once she met her new pediatrician we got the list of referrals.
New clinic means new specialists. And it means that I tell her story to a new doctor every time. Sound like fun? Not unless you’re having a giggling session with the sweet girl who patiently waits to say “hi!” to another doctor.
Today was her scoliosis specialist. Back when she was five she was diagnosed with a mild-moderate curvature. And we ended up with…the back brace. She hated it. She cried. She pulled it off. We duct taped the Velcro straps to keep her from removing it. We put zippered footie pajamas on backwards over it to keep her from slinking out of it. Finally, thankfully she outgrew it. And her dad and I weighed the pros and cons. We decided it wasn’t worth the torture it put us through (they are NOT designed for a non-potty trained child).
I felt guilt. Every day, hoping that that choice was the right one. Knowing she was comfortable and playing contentedly made it so much better. But I still felt guilt. Because I’m not a medical professional. And what if my choice was hurting her more.
So today, after a long discussion where my husband and I agreed still we didn’t want to put her through that when she can’t understand WHY we’d put her in that, I braced myself for a new doctor. I was ready to plead and ask for any other solution.
So, to my relief, this provider said “no.” He said even if she was a newly diagnosed patient he still wouldn’t. And I could have cried. And I laughed saying “Good, because I was prepared to argue against it.” And we both smiled as he said he’d rarely dispute a mom’s theory.
So we are still watching it. We will still do X-rays and see them again soon. Until then we will continue to meet and explain our girl’s story for the thousandth time. But…I have providers that work with me, listen to me and have giggling episodes with my kids. For that, and a million other things, I’m grateful.