Friday, November 15, 2013

Our Girls

I love this big girl of mine so much! She makes me one proud momma...most of the time :)


And this little girl of mine....makes it really hard to be in a bad mood (at least for a long period of time.).....even today when she decided to take it upon herself to change her own poopy pull up :/. Lucky for all of you, I don't have pictures of that mess!


Thursday, October 31, 2013

Happy Halloween

HAPPY HALLOWEEN FROM THE RUSSELL FAMILY!
 
The scary pumpkin head person....and the little witch :)


 

 
Because of the weather, we decided to go Trick or Treating last night.  We had so much fun!!!  Of course Randy and I were busy chasing Flash, I mean Sophia, all over the neighborhood.  She just can't contain her excitement sometimes :)  There were so many people and so much to do, she didn't know where to start!  But it was the cutest thing watching her sprint across the yards, right up to the door, give a little knock, then step back and wait :)  And as soon as she got her candy, she was off, looking for the next porch light.  Her greatest treat came at the last house we went to though....a bag of cool ranch Doritos.  Bless that man!  He made one little girls Halloween night, just perfect :)
 

Wednesday, October 30, 2013

Tuesday, October 29, 2013

Raising Awareness and Social Media

In a society where women are still terminating their pregnancies solely based on a Down syndrome diagnosis and some medical professionals are giving parents false information on what their child's life will look like with Down syndrome....I think that any positive awareness put out in the media about Down syndrome is awesome!  I want people to see stories like the ones listed below, and understand that life, with Down syndrome, is worth living.

Just a few of my favorite stories about individuals with Down syndrome making a difference: 

1. Teddy Kramer, Cincinnati Reds Batboy and his own Baseball Card

2.  British artist, Tazia Fawley, paints a gift for Prince George

3.  Middle school student, Owen Groesser, makes 3 pointers

4.  Katy Perry's Roar Contest Finalist






Monday, October 28, 2013

A Cure for Down syndrome

New research is offering clues about what is happening in the brains of people with Down syndrome and why they appear to age more rapidly than others. 

Many individuals with Down syndrome get gray hair, wrinkles and even develop Alzheimer's disease in their 40's.  Researchers say they now have more evidence that the cause of this accelerated aging could be a high level of what's known as oxidative stress in the neurons of those with the chromosomal disorder. 

Researchers took skin cells from individuals with Down syndrome which they transformed in order to grow brain cells.  Doing so allowed the scientists to observe how brain cells in those with the chromosomal disorder develop from the start.  They found that communication between brain cells in those with Down syndrome are occurring at just 60 percent of the level seen in typically developing individuals.  Those with the chromosomal disorder had significantly more genes designed to respond to oxidative stress, which occurs when there is tissue damage, and these genes were present from day one in the cells studied.

"This suggests that these cells go through their whole life with oxidative stress, and that might contribute to the death of neurons later on, or increase susceptibility to Alzheimer's," said Anita Bhattacharyya, a neuroscientist at the University of Wisconsin-Madison who worked on the study. 

The finding is significant, Bhattacharyya says, because scientists may now be able to use the brain cells they've grown to test or design drugs to potentially treat symptoms of Down syndrome......

When I hear the word 'cure', I think of someone who is sick.  My daughter isn't sick.  Would I like to take away all of her struggles and challenges and make things easy for her, of course, but at what expense. 

Yes, Sophia's extra chromosome has caused her to have health issues.  It has also increased her risks of developing other health issues later in life.  This has been the worst part of having a child with Down syndrome.  The fear that I go through as a parent always thinking that one day these health risks are going to catch up to us and smack us right upside the face.  But the reality is, any child is at risk for developing anything in their life.  But because we have a Down syndrome diagnosis in our back pockets, we become more aware of just how likely it is to have to face certain roads. 

I think all parents of individuals with Down syndrome would like to help make their child's life easier in ways and to prevent, or slow down, the aging process in adults with Down syndrome, but it's still unclear what the costs may be to this new research. 

There is so much more to people with Down syndrome besides health issues and developmental delays.  Most people with Down syndrome offer lessons in patience, kindness, and what it means to be human.  There is something positive that people with Down syndrome contribute to the world.  Would this 'cure' take all of that away too?

Sunday, October 27, 2013

A Broken Heart

How does a parent prepare themselves to see their child like this?  I don't know that you can ever prepare yourself enough to see your child in such a fragile state.  No matter how much you read and research and try to prepare, it's a whole different ball game when it's your child in a particular situation.

 

I remember the day that we found out about Sophia's heart defect, something that is pretty common in children with Down syndrome.  She was two days old and they were about to take her back for her first surgery, to repair a blockage in her intestine.  They informed us that Sophia had an Atrioventricular Canal Defect (AV canal defect) and would eventually need surgery.  Basically she had two holes in her heart, one in the upper chamber and one in the lower chamber of the heart, causing her blood to mix.  Sophia was monitored very closely by her cardiologist for her first few months before it was evident that due to Sophia's pulmonary hypertension, she was going to need to have her heart repaired, at 6 months old. 

I knew it was coming, but the day I heard the news that we would be moving forward with her open heart surgery (OHS), it was a blow to the stomach.  I wasn't ready for this.  But I went home and tried to find as much as I could about babies with Down syndrome and having OHS.  I found some helpful things that prepared me a little for what was about to come, and then I found things that only took me to a place I never wanted to go. 

When the day finally came and we had to hand our baby over to her team of nurses and her heart surgeon, I didn't know what to do.  I had no control over what happened inside that surgery room.  I felt helpless and scared.  A million 'what ifs' went through my mind that only did more harm then good.  So the only thing I knew to do was pray.  I had to put my trust in God's hands.  If anyone was going to take care of my baby girl in that room, it was going to be Him.  In such an emotional state, that was the only way to find any comfort in the situation....to know that God was with my baby and was going to keep her safe for me.  And He did just that.

Sophia came out of surgery with a mended heart and no complications.  Thank you Jesus!  She definitely looked intimidating at first, but she needed me and I needed her, so I had to put my own fears aside and be the strong mommy that my little girl needed me to be.  When you see the pictures right after her surgery, it's looks horrific almost.  But nine days post surgery and we were getting our discharge papers and heading home, complete with a whole heart, and a new outlook on life.