I haven’t done too much this month in terms of spreading awareness, at least not like last year where I wrote a post a day. So I’ve decided that maybe I’ll give an update on Gigi. I haven’t done that in a while and people often ask me how she’s doing, which I appreciate. I … More Gigi Update for Down Syndrome Awareness Month
For all of the parents out there that are anxiously awaiting the birth of their baby with Down syndrome, I know how you feel because I’ve been there. I know the emotional roller coaster that you are riding. I know how you hate the unknown. There is such a wide range of abilities and health issues with individuals with … More Tips For Surviving a Down Syndrome Pregnancy
Heart defects are not uncommon with Down Syndrome. According to the CDC, around 50% of children with Down Syndrome have heart defects. That’s a scary percentage. Flip a coin and your child will either have it or they won’t. Having a child with Down syndrome is one thing but add a heart defect and that … More Heart Update
Wednesday was the 3rd annual Down Syndrome Advocacy Day at the Massachusetts State House. The Massachusetts Down Syndrome Congress (MDSC) was requesting that members of the Down syndrome community go to the State House and help advocate by speaking with their state legislators. I wanted to attend for two reasons. First of all, what a great opportunity to be … More Down Syndrome Advocacy Day
March 21st (3/21) is World Down Syndrome Day. The date 3/21 is significant in that the genetic disorder occurs when there are 3 copies of the 21st chromosome. There are a number of ways that people in the Down syndrome community celebrate this day, two of the most common being wearing brightly colored socks or performing … More March 21st is World Down Syndrome Day
Last month we had our IFSP (Individual Family Service Plan) review where our therapists from early intervention evaluated Gigi and together we came up with new goals to work on for the next year. So I figured maybe I’ll write a blog post on how Gigi is doing. A lot of people ask me that lately. So … More Gigi’s Progress Report
It’s not surprising that the “R-word”, or the word “retarded”, is not acceptable in the Down syndrome community. There is a whole movement to erase the word from vocabulary. This movement is called “Spread the Word To End the Word”. Today is national spread the word to end the word day. A number of my friends have … More Our Children and the R-word
Gigi had a sleep study last night. Dr. Skotko once told us that every child with Down syndrome gets an automatic pass to a sleep study since apnea is common in individuals with Down syndrome. I just didn’t think it would happen this early, but since Gigi’s oxygen saturations dipped so low during sleep while … More Sleep Study
Gigi woke up a couple of Saturdays ago with a lot to tell me. I remember she was very chatty but didn’t seem to be feeling well. The rest of us had been battling a respiratory virus for the past week and it looked like she finally caught it too. Her eyes were glassy, she … More 12 Days in the Hospital
The title of this blog post is something I never expected to experience. In fact, one thing I heard over and over again when I was pregnant was “babies with Down syndrome often have trouble nursing.” I feel like all I heard was that breastfeeding may not be possible due to low muscle tone and … More When Your Baby With Down Syndrome Won’t Stop Breastfeeding
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