In Their Own Words Episode 2

The girls share what they have learned about Alea in the last 2 months as well as thoughts about her Blessing Day.  Sorry for the video quality.  I won't use the Flip next time.

Alea's First Photo Shoot

Our friend Lesli took these pictures.  You can see more of her work here.

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!

A Life Like Yours: Maddie's Story

I read this off a new friend's blog, so I thought I would post it here. This month is Down syndrome Awareness Month.

"For today's 31 (days) for 21 (chromosomes) I am posting this inspriational video about Maddie. What a beautiful young lady! This is from the Catholic Archdioces of Washington. It is from a piece titled,“A Life Like Yours” On The Dignity of the Disabled and the Call to Save Them From Abortion, By, Msgr. Charles Pope. Click HERE for the link to the entire article."

You Need to Repent Dad!

So as I was tucking EC (7) into bed tonight, we got on the discussion of making mistakes.  I shared an experience I had when I was 8 or 9 where I had made a mistake.  I wanted her to see how I used my parents a lot when I was young to help me when I made poor choices.  She assertively turned it into a session where she was acting in a counselor type roll as she asked me how I processed the mistake.

"And how did you feel Dad?  Did you tell someone? Yes, you did!  Everyone makes mistakes Dad, but you fixed it!" and on and on.  You have to know EC and her kindness to appreciate her tone.  Not sure how this went from a session of how parents can help us when we feel  bad to a psychoanalyzing my ability to repent at 9 years of age.

It did not end there.  "And Dad, what did you yell at the game?"  I had taken her to the last BYU home game.  I thought about it and said, "Go Cougars!"

EC:  "Ya Dad, but what did you yell to that ref?"

In my defense it was a cheap shot that ruined a guys season.  You can see the play here.

So ya, EC asks what I said to the ref.

Me: "I yelled 'that was terrible'".

EC: "Yes Dad!  And did you ever say you were sorry?"

Me: "No"...

EC:  "Well Dad, you need to find that ref and apologize if you are ever going to feel better.  You need to repent".

GULP!  Now what do I do?  She has a point.  It was so matter of fact with no judgement in her voice.  She knew I had made a mistake, didn't love me less for it but wanted me to feel better and repent.  I left the conversation feeling a little ashamed, but very proud at the same time.  I think Duct Tape for me, or ear plugs for her are in order for her next Daddy/Daughter date to the game.

Eat Alea Eat!!

I am so sorry it has been a while since my last update.  Keeping up with Alea is taking constant effort.  Here is an update on how she is doing.  Feeding her has been challenging.  I won't go into all the details, but most importantly she is growing.  When we first had Keena, I stayed home for three months while I was finding a job and took care of Keena.  After that experience I swore I would never come home from work wondering what Jodi had done all day.  Taking care of kids, especially a newborn takes A LOT OF WORK.  Alea takes that and then some.  OK, enough with the negative.

A week ago Friday we went to the cardiologist.  He said her lungs and heart are healthy.  He said she still has a pin hole in her heart from the left side to the right side, but not to worry.  I guess 1/4 of the population has that, so he said there was nothing to worry about.  He told us to try taking her off oxygen in the day and watch her.  We have done that for the last week, and she only requires oxygen if she is in the swing and at night. 

Overall she is a very good baby.  We love her so much. We went and did the buddy walk for her last saturday.  It was a lot of fun.  There are some pretty incredible people in this world.  We have raised $889 so far.

I was taken to task a little this week by someone who read the blog.  In regards to my "What is normal" post I was told by making this blog about Alea and not the rest of the girls is focusing the attention on her and using her condition for attention.  As I go forward with this blog I intend to bring stories of our son Austin and more of Keena and EC into the mix, but for now Alea is at the forefront of all of our minds so she will be the focus of the updates. 

I would say I am sorry for not more of an update, but I am thankful there isn't much of one as Alea seems to be doing really well.  We will bless her next week.  We are looking forward to it.

This week in Pictures