The Story So Far
ICYMI, here's a brief recap of the last three months!
It’s the official launch day of our Noah-centric newsletter! It also happens to be World Down Syndrome Day.
As a newsletter that celebrates Noah, we couldn’t think of a better day to launch. We’ll talk more about WDSD in a moment. But first, some Noah updates!
Previously, on Noah’s arc…
Whether you’re new to following Noah’s story or want a refresher on what he’s been up to since he got home from the hospital, here’s a quick recap of the last three months:
Noah was born at 34 weeks, at 3:30 am on December 6, 2021. He weighed a whopping 4 lbs 10 oz.
We were informed mere hours after his birth that he exhibited some signs of Trisomy 21, or Down Syndrome. This was confirmed via blood test a few days later.
He spent 28 days in the Neonatal Intensive Care Unit (NICU), primarily learning to feed. It was a long month, but we were able to visit him every day.
He was released on January 3, 2022. It was great to finally have him home!
Noah needs interventions to help him grow and develop. He received speech (to support feeding) and occupational therapy in the NICU. As an outpatient, he continued speech and started physical therapy.
We began the process of getting him into Early Intervention, a federal program that will provide ongoing therapies in the home for free.
He had a lot of appointments - with his regular pediatrician, a cardiologist, a genetic pediatrician, and an Ear, Nose, and Throat specialist (not to mention all the Speech and PT).
We enjoyed a lot of family time with hugs, cuddles, and stories, and songs!
We started to get involved with the New York chapter of Gigi’s Playhouse, a national network of Down Syndrome Centers.
Because he was so used to the bottle from the NICU, learning to breastfeed was a huge challenge. But he and Katelyn kept at it, and we are thrilled that he’s now breastfeeding exclusively!
He’s steadily gained weight, which his pediatrician is very pleased with. He’s now double his birth weight!
And Matt’s personal favorite…he went swimming for the first time!
Today is World Down Syndrome Day! This global awareness day has been officially recognized by the United Nations since 2012. It’s always observed on 3.21 in honor of the triplication of chromosome 21, the cause of DS.
There are many ways you can participate. An easy way is to start educating yourself about Down Syndrome. Or read some stories from people who have it.
On social media, use #WorldDownSyndromeDay and #InclusionMeans to share what inclusion means to you and advocate for the disabled community.
Or you can go a step further and become a World Down Syndrome Advocate, joining a global campaign to advocate for the rights, inclusion, and well-being of people with Down syndrome.
Prayers and Praises
Praises
Noah’s weight gain
Noah is cooing, smiling, and laughing!
All the friends he’s gotten to meet
Prayers
At his ENT appointment, Noah’s left ear failed his hearing test, most likely due to a build-up of fluid. We go back for a follow-up in May to see if it’s gone. If not, he may need to get tubes surgically inserted to drain the fluid
We want Early Intervention to start soon so we can start getting in-home treatment, and we hope we like his new therapists!
Loving the updates, and especially the swimming pic! He could be a mer-man by the looks of those bubbles........
You three have overcome so much already and I know it will continue! So much care and perseverance shown in just three short months. I can't wait to keep following your journey!