Gigi was born with Down syndrome in Fall 2014. At 8 weeks she was smiling. At 8 months she was sitting independently. Before she turned a year she became mobile in that she would scoot around on her butt, but hasn’t cared to crawl or pull up to stand yet. This is all due to her low muscle tone, which is common in individuals with Down syndrome. At 17 months she began showing the ability to use numerous signs to communicate such as “more”, “bye”, “mom”, “fish”, “music”, “car”, “all done” just to name a few.
We have multiple therapies every week through early intervention services to help Gigi work on getting stronger. She sees a physical therapist, occupational therapist, speech therapist and developmental therapist. I don’t worry too much because I know she’ll eventually get there.
One thing I worry more about is her health, which has been pretty good so far. She’s had a number of colds with minimal issues however one respiratory virus did land her in the hospital for close to two weeks. Many children with Down syndrome are prone to complications from the common cold such as chronic ear infections and pneumonia. We added the RSV vaccine to her line of defense this year.
Regarding her heart, she has a hole, or an atrial septal defect (ASD), which still has a 20% chance of closing but is unlikely. It’s not bothering her now, but over time it will have caused too much blood flow to her lungs. As a result, at around age 3 or 4 she will have a procedure to place a device to plug the hole.
Update June 2016 – Gigi’s hole has reduced in size going from 5mm to 3mm. At 3mm no intervention is required!
I’m a wife and mom of three amazing girls – our oldest is like a little mommy, our middle is a firecracker with a lot of sass, and our Gigi, born in November 2014, is a joy to all of us. I received a prenatal diagnosis of Trisomy 21 (Down syndrome) at 11 weeks of pregnancy through NIPT (Non-Invasive Prenatal Testing). I’ve been blogging since Gigi was born. My writing has been featured on The Mighty and will also be included in the 10th Anniversary Edition of the book Gifts: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives.
I am far from what I would call a writer; I attended school for Engineering where I didn’t take a lick of English because apparently I completed the prerequisite of growing up in an English-speaking country. However, I’m finding it therapeutic to write about our journey. I am also using this blog as a space to keep my resources, useful links, etc., in one spot. I’m also blogging to share updates on our general family life and hopefully spread a little Down syndrome awareness. When I was pregnant, the internet was my main source of information. Personal blogs of families who had children with Down syndrome were incredibly helpful resources in that they showed me what daily life looked like in a way that medical books and websites could not. I’m hoping this blog will provide the same thing for new parents just embarking on this journey. A number of expectant and new moms have contacted me and I’m so glad that they have! I can be reached at firstname.lastname@example.org