One of the most common questions I get asked might surprise you. It’s not usually the hows or the whys; most people ask simply – what’s it like? Specifically, most ask what therapy is like for a baby. But I thought I’d take this question a little further into simply ‘what’s it like to have a baby with Down syndrome?’ The short answer is, it’s not really “like” anything to have a baby with Down syndrome. For the most part, it’s just like having a typical baby. But then I have nothing to compare, so maybe it’s totally different and this is just my version of normal.
My initial reaction is to say it’s the same, but with more appointments. It’s true that people with Down syndrome (children in particular) are at higher risk for autoimmune diseases, leukemia, hearing loss, ENT issues, hypothyroidism, and their immune systems are typically more vulnerable to infection. As a proactive measure, we’ve had more bloodwork and testing than typical babies. Regan has had vision and hearing screenings, bloodwork for heart failure, thyroid checks, and a renal ultrasound to check her kidneys, to name a few. It can be daunting at times, but each test feels like something else we’re simply checking, and I find there to be power in knowledge and understanding.
As I mentioned, one of the most common questions I get asked is, “what does a baby actually DO in therapy?” I can understand this question; a baby in physical therapy almost seems like a paradox. I would describe it more as “structured playtime”. Where typical babies glide through developmental milestones with relative ease, kids with Down syndrome (and other conditions that affect physical and cognitive development!) take their time with development, and research has shown that therapy can help improve those timelines. Regan gets Physical and Occupational Therapy once a week. Physical therapy focuses on her gross motor skills – think rolling over, crawling, sitting, standing, walking. Occupational Therapy focuses on fine motor skills – think using your pointer and thumb “pincher” grasp to pick up small objects, self-feeding, turning book pages, clapping, etc. During therapy, the therapist gives Regan physical cues to help her learn how to “turn on” the muscles she needs to use to do these things. We guide her movements by triggering muscle groups. For example, we might support her mid-section/tummy while she is in hands and knees to help her learn how to crawl. Or we might hold her hand such that she can only use her pointer and thumb pincher grasp to pick up an object. There are times she dislikes therapy, but the strides Regan has made with the help of therapy are incredible.
Within two months, Regan went from strictly belly crawling to transitioning easily in and out of a seated position. She’s can easily get into a four-point crawl position, though she still prefers her little scoot method of moving. Regan can pull into kneeling on her own and is starting to get into a bear crawl position on hands and feet. One of her Occupational therapists told me this week she rarely sees this much progress in such a short time. I’m beaming with pride!
Regan also had a cardiology follow up this week. If you’ve been following, Regan was still on one medication to control her heart rate after some episodes in the NICU where her heart rate increased rapidly. Well my friends, we have out-grown that medication and as of yesterday, REGAN IS OFF ALL MEDICATIONS!!! Did you hear me? WE ARE OFF ALL MEDICATION! Her cardiologist said she’s (and this is a direct quote), “never seen an AV canal repair as good as hers.” We are in the presence of a walking miracle! [Ok, maybe not walking yet, but we’ll get there!]
This week also featured World Down syndrome Day, and I got so many messages, texts, and pictures of y’all rocking our crazy socks! Y’all are changing the world for the better! There were days that seemed endless in the beginning, but I can tell you this week has my heart bursting with pride. Thank y’all for always showing so much love for Regan and all her buddies. Happy WDSD!