Saturday, March 21, 2015

World Down Syndrome Day

     Today is World Down Syndrome Day.  Get it--3/21 for 3 copies of chromosome 21.  A year ago I did not know this day existed, I could not have imagined how significant it would be to me this year.  The past few months I have done quite a lot of research on the subject and have learned so much.  If you know me at all, you realize that sometimes I can get a little obsessed about something.  My current obsession is reading books, ebooks, blogs, message boards, etc. about Down syndrome.  I read one post where a lady who was expecting a child with Down syndrome decided to give up researching Down syndrome for Lent, because she was going a little overboard.  I considered this, but thought that a medical issue might come up at one of my appointments, and I would have to research it, plus I am not Catholic, so I decided against it!  Anyways, I wanted to post today to focus on some of the positive things I have discovered about Down syndrome and show how far things have progressed in recent years.
     In 1929, the life expectancy of an individual with Down Syndrome was 9 years!  Now the life expectancy is 55-60 years, thanks to the many medical advances.  Dale Evans Rogers (wife of Roy Rogers) wrote Angels Unaware in 1953 about her daughter Robin, who had Down syndrome.  This was first book ever written by a parent of a child with special needs.  It was written at a time when doctors often advised parents of babies with disabilities to put them away in institutions or homes.  The Rogers refused to do this and raised Robin in their home.  This book changed the way America looked at children with special needs.  I happen to have several copies of this book, thanks to my Grandma, who had several copies of this book and gave them to me, some of them purchased when the book first came out in the fifites.  
     Today, thanks to advances in education, children with Down syndrome have a bright future ahead of them.  Here is a link about a photographer who has Down Syndrome  Read here to learn more about a restaurant owner with Down syndrome  Here is a famous potter who has Down syndrome  And we all remember Corky from Life Goes On.   Here is a link to his fan club
     Advocates for Down syndrome, and other conditions, recommend using people first language.  Always using the terminology a child with Down syndrome instead of using Down syndrome as an adjective, like "Down syndrome baby."  I think we can all agree that the person is more important than whatever condition he or she has.  Also, we should avoid using derogatory words to describe intellectual disability, even if we are telling a joke.  It really is hurtful.
     Having a family member with Down syndrome actually enriches the family's life.  Research has shown that siblings of children with Down syndrome tend to be more compassionate and well-adjusted.  Siblings of children with Down syndrome are more likely to choose service related careers like social work, medicine, or education.  One study showed that while the divorce rate among parents of a child with special needs is higher than average, the divorce rate among couples who are parents of a child with Down syndrome is lower than the average divorce rate.  
     A few books I have read and recommend to anyone who is interested include A Good and Perfect Gift by Amy Julia Becker, Bloom: Finding Beauty in the Unexpected--A Memoir by Kellie Hampton, Angels Unaware by Dale Evans Rogers (although the language is outdated and would now be considered offensive), and I am currently reading The Shape of the Eye: Down Syndrome, Family and the Stories We Inherit by George Estreich and so far I recommend it.  Some of these authors also have blogs, which are much more interesting than mine!  Believe it or not, I am actually not a writer, I had to look up how to punctuate the title of a book when writing an essay.  According to the MLA, you italicize it.  
     So, enjoy this day and think about the people in your life that have Down syndrome, or just think about our sweet little baby you will be meeting soon!  It is kind of fun to have another holiday to celebrate each year.  

Thursday, March 19, 2015

Great news!

     We went to see the high risk doctor and pediatric cardiologist today.  Due to confusion about when the cardiologist was going to be at the location I usually go to, I was scheduled downtown and was seeing a different high risk doctor, who I know, but not as well as the one I usually go to.  I was expecting to be there about 3 hours, since the appointment was a 12:00, I was seeing two doctors and I know they have a lot of patients to see.  When I got there, they told me there was a scheduling change and I was seeing another high risk doctor, who is one of my favorites and who hugged me and called me "Ang".  The nurse, who is very sweet, also remembered me from the MED, where I used to deliver babies.  It turned out that a couple of people did not show up for their appointments, so they seemed to actually be waiting for me.  Once they started looking at the heart, they called the pediatric cardiologist in to give his assessment.  Well, they did not see the VSD (hole in the heart)!  They said that either it was never there to begin with (although it was there in 2 other scans and I saw it when they showed it to me), had closed, or was so small that they couldn't see it.  If it is still there and just was too small to be seen, the cardiologist assured us that nothing would need to be done about it anyways, just monitoring it after he is born!  
     We are thrilled to say the least.  I still have an increased amount of amniotic fluid, but it has not worsened, so that is good news as well.  We are so very thankful for all the prayers and kind words and believe this is a direct answer to prayer.  
We also have a name.  Asher (meaning happy or blessed and also was from the same tribe as Anna) Samuel (God heard).  

1 Samuel 1:27 "I prayed for this child, and the Lord has granted me what I asked of him."

Sunday, March 8, 2015

"Small" news and sneak peek

    We went to the high risk doctor last week for another look at the heart.  I went in hoping that the VSD (hole between the bottom two chambers of the heart) had closed.  It had not, but the doctor thought it was smaller.  We will meet with the pediatric cardiologist in a couple of weeks and here more on what to expect.  
    They also found that I have an increased amount of amniotic fluid.  This has certain risks associated with it, and will be monitoring me more closely.  It basically makes your body feel like you are further along than you are, making you look and feel further along than you are (awesome) and potentially deliver early.  The good news is that mine is only mildly elevated and if it were to get extremely high, they can actually drain it. 
     The best thing about seeing the high risk doctor is that you get to see your baby more often and  they usually give you lots of ultrasound pictures, including 3D!  Here's a sneak peek.   
     Thanks for all the thoughts and prayers.  It really is overwhelming to see how many people love us.