Wednesday, May 4, 2016

Down Syndrome | Reece's Rainbow


I'm sure a lot of you are wondering more about Quinn. I know we are! As I mentioned before he has special needs (or we wouldn't be able to adopt him in the first place) but specifically, he has Down Syndrome. We know he is amazing for many reasons, and this happens to be one of them. We don't have a lot of experience with DS, so we have been trying to learn more and would like to take a moment to share some of what we have learned. I got most of my information from the website noahsdad.com and the National Down Syndrome Society

First, some stats and facts!

  • Down Syndrome occurs when there is a full or partial extra copy of chromosome 21
  • It is the most common genetic condition; approximately 1 in every 700 births
  • Down Syndrome occurs in people of all races and economic levels
  • 85% of infants born with Down Sydnrome are diagnosed after birth
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone (hypotonia), small stature (which Quinn definitely has), an upward slant to the eyes, flat features, and a single deep crease across the center of the palm (side note, randomly -or not- Mark has this line on his palm.) Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all (more here)
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses
  • Quality educational programs, a stimulating home environment, good health care and positive support from family, friends and the community enable people with Down Syndrome to lead fulfilling and productive lives
  • See more here
So for those like me that need things laid out in layman's terms, what is Down Syndrome?





"Down syndrome (Trisomy 21) is a chromosomal abnormality where a child is born with three copies of the 21st chromosome (Just like in the picture!)

Chromosomes hold our genetic information, and there are 23 types of chromosomes. One set of those being your sex chromosomes (X, and Y), and the others labeled 1 through 22. When babies are created, they receive 23 chromosomes from their mom contained in her egg and 23 chromosomes from their dad contained in his sperm, totaling 46 chromosomes.

Children with Down syndrome are born with an extra 21st chromosome." (I got this here)

Got it? :) Good!

So, once Quinn get's home we will be doing a lot of doctor's visits. This is mostly due to the fact that he has been institutionalized for his entire life and less to do with DS, although that will play a part too. We want to make sure we catch whatever needs to be caught as soon as possible. After initial visits some things we expect to be doing long term (as needed) will be speech therapy, occupational therapy (fine motor skills), and physical therapy (gross motor skills).

From the very limited reports we have on Quinn, it shows that he is a happy healthy little guy. He walks and runs and likes to play, just like any little 4 year old. We just can't wait till he is playing here with us!!

P.S.

I don't think I have ever explained what Reece's Rainbow is and why it is all over our blog. Reece's Rainbow is a non-profit grant organization that is focused on helping orphaned children with Down Syndrome find their families and raise money for adoption costs. They are so cool!

It is a great way to get involved. You can financially sponsor a specific child, family, or Reece's Rainbow in general. You can become a "warrior" for a specific child or family (spreading the word and trying to help with fundraising efforts). And basically do something really meaningful in the world. They have provided us with a fantastic network of families who are doing what we are doing and it is amazing to see the Lord's hand in so many ways. You can find our family sponsor page here

2 comments:

  1. The only down side for this Grandma is he is currently SO SO SO far away, and once we get him here he will be SO SO far away...just like the 2 of you! Love & Miss you:)

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  2. Frances Goodman, May 6, at 12.29 AM
    And also the downside for this GREAT Grandma of 84, so, so far away in Utah from St. David, AZ. It is good that I have several in Utah, so the trip will be even more worth it to see them all. We all welcome Quinn Ryan and will appreciate your participating in this of God's adventure.

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