Friday, October 8, 2010

Say What?!

 "The highest form of ignorance is when you reject something you don't know anything about." ~ Wayne Dyer

As I look back over the last several weeks, I have learned so much about something I knew next to nothing about.  Below is a glossary of terms to which we have been introduced.

Angel - Angels have no philosophy but love.  ~Terri Guillemets

Buddy Walk - The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome. Today, the Buddy Walk program is supported nationally by NDSS and organized at the local level by parent support groups, schools and other organizations and individuals.

Diaper Count – due to the hypotonia, babies with Ds are more likely to have Gastrointestinal Tract issues.  Each wet and messy diaper is a good thing!  They say babies eat, sleep, and poop.  Alea does all three, and we are very happy.

Early Intervention - Children with Down syndrome typically face delays in certain areas of development, so early intervention is highly recommended. It can begin any time after birth, but the sooner it starts, the better.

Epicanthal folds - is a skin fold of the upper eyelid, from the nasal bone to the inferior side of the eyebrow, covering the inner corner (medial canthus) of the eye. This lower fold of the upper eyelid gives the eyes of certain East Asians an appearance which seems relatively narrower and almond-like.

Example – My cousin Melody has Ds.  She is awesome and is such an example.  She is a great downhill skier and loves to dance!   She also played in the marching band!!  She graduated from high school and is now working for the school district.

Growth Chart - Children with Down syndrome are generally smaller than their typically-developing peers, so Down Syndrome Growth Charts have been created by physicians. The percentile curves on the charts were derived from a longitudinal study examining the growth patterns of individuals with Down syndrome.

Hypotonia  - low muscle tone

John 9: 1-3 – We are so excited for all the things she will teach us.

Kids on the Move - Kids on the Move is a non-profit organization based in Orem, Utah that provides support and services to children and families in Utah County. Kids on the Move serves families with children birth to age three, including families of children with special needs and also low-income families. Kids on the Move provides services and support to children and families through four main programs: Early Intervention, Early Head Start, the Early Education Center, and Noorda Family Resource Library.

Love – Our family has been through so much over the course of the last few years and we needed Alea.  We lost our son Austin at birth due to a fatal abnormality, Jodi’s dad and brothers joined Austin as our own legion of angels.  Alea is now our angel here on earth and has given such happiness and increased our love.

Pulmonary Hypertension - an increase in blood pressure in the pulmonary artery, pulmonary vein, or pulmonary capillaries, together known as the lung vasculature, leading to shortness of breath, dizziness, fainting, and other symptoms, all of which are exacerbated by exertion.

Simian Crease - a single line that runs across the palm of the hand.

Spirit – We had a friend stop in when Alea was first born.  When she held Alea she started to cry.  She said “I am so humble just to be able to hold her.  She truly is an angel.  I can’t wait until the afterlife when we find out how valiant she was before she came to earth.”

Support – The people who helped raise money for the USDF through the buddy walk were so generous.  We met our goal in a week, and then blew it out of the water.  If you are interested in donating to the cause you still can.

Syndrome - a collection or group of features and symptoms with a common cause, that characterizes a specific condition.

UDSF - A non-profit organization established in 1977, the UTAH DOWN SYNDROME FOUNDATION provides outreach, training, support, education, information, and activities for individuals with Down syndrome, their parents and families, and the community. With 15 chapters throughout the state, this volunteer organization has grown to become Utah's largest support provider for the Down syndrome community.

Unlimited expectations - it is important to acknowledge the things that children with Down syndrome can do. They can learn to walk and talk, they can learn to ride a bike and they can learn to do many of the things that other children do. It is very important not to have limited expectations for a child with Down syndrome and to give them as many opportunities as possible. Let them show you what they are capable of doing!


  1. Thanks for always teaching me to be better Chris!! :) You are so amazing!

  2. Love it! And I love that you two are looking at each other in the picture!

  3. The first entry in the glossary was amazing and it just continued from there. This was great!

  4. Thank you for your comment on my last entry. I just replied. Even though I'm replying here with a little of what I said in that comment, I just wanted to reiterate how much Alea's story helped us to change our perspective on the Down Syndrome Diagnosis. When we were going through that period of time where most likely little Clara would be diagnosed with Downs while still in Utero, a friend sent me the link to your blog. It wasn't until I started to read about little Alea, and how much of a blessing she is that I actually felt better and hopeful that if something were to come back positive, we were hoping for either a diagnosis of Downs or Turners instead of the more fatal chromosome problems out there. It was important for me to tell you just how much your blog changed our perspective. Your blog helped me prepare for a Downs Diagnosis if that's what were in our cards. Downs isn't a negative diagnosis. Downs kids are just as special as anyone else.

    It turns out now that our little Clara doesn't have a Chromosome problem, but now we are dealing with the fact that it could be a genetic problem or a physical abnormality. She's only 15 weeks gestational age. We just want her to have the chance to be born and live a healthy life. Thank you for opening up our eyes to what Down Syndrome REALLY is. Your Daughter is a beautiful little inspiration and I look forward to watching her grow on your blog.

    Erica & Family