World Down Syndrome Day

 

Today, as you may know is World Down Syndrome Awareness Day.

Today is a day that we celebrate, embrace, and acknowledge those who were born with Trisomy 21.  

Years ago , I had never even really heard of WDSD, let alone ever think I would be a parent celebrating my child with Down Syndrome.

But I am.

And I am happy to celebrate him, honestly I think he deserves it.  

He deserves to be recognized as someone who is just like everyone else.  Someone who should have the same amount of love, compassion, and patience showed towards  him as any other child would have. 

 I am a blessed to be his mother.

I am not special, super human, or a saint....

I'm just a mom , who grew the child that we made. 

Nothing magical, nothing amazing.

Just a mom who loves her son.

 Sup?

 Not impressed, Mom...

 My little ham

 Sweet face

 Mason and Mommy

Playing peek a boo

If you would to follow us:

Instagram ( mrsbandherboys)

and our FB page

https://www.facebook.com/pages/Prayers-for-Mason

What were using .....

I get emails about what we are using for Mason's developmental progress.  So I decided to do a post about what we are using!

For Fine Motor skills we play with lots of blocks:

These are the main 2 kinds we have.
Wood Blocks

 

Alphabet Blocks

 

Shape Sorting Blocks

He got the Fisher-Price Laugh & Learn Apptivity Case

 

He enjoys playing with the apps and watching the screen.

We mostly use this for Dr. appts ( to keep him busy)

He has really enjoyed his Earlyears lil Shopper Play set

He enjoys taking the "groceries" out of the bag, and each item does "something". 

 The milk carton opens and has a mirror, apple has a rattle, banana peels (and has a krinkle noise), Orange opens and has a rattle, and lettuce has krinkle noise.

He has really enjoyed this set ( I keep the milk, banana, and orange in the diaper bag for quite play during church)

Great Grandma got him the Kidooie Peek N Peep eggs

I cant find a pic , but these are another toy that Mason LOVES

Its a great fine motor toy.  He enjoys taking the tops off the eggs, opening the carton, and trying to put the tops back on.

This toy will also grow with his development.  The eggs have a shape on the bottom and only fit in a certain spot. So later he can work on fitting the shapes in , colors, and matching the faces with the eggs. (Colby plays with this toy as well at almost 4yrs old and he enjoys it!!

Melissa & Doug Magnetic Hide and seek farm

 

Pretty simple to explain... He loves opening the doors and moving the magnetic animals around.

 

 

We also got several Leap frog toys for Christmas that Mason really likes to play with as well:

AlphaZoo Spinner

 

 He likes the music and pushing the big yellow button to make it spin



Next I will post on the things we are using to work on sign language with Mason.

Have a Great Day!!

Congenital Heart Defect Awareness Week

As many of you know, Mason was born with a Congenital Heart Defect.  He was born with Atrial Ventricle Spetal Complete, and under developed heart valves. 

Mason being born with a CHD makes him 1 in 100..... Why 1 in 100? 

 *Congenital heart defects are America’s and every country’s #1 birth defect. Nearly one of every 100 babies is born with a CHD

After finding out about Mason's heart condition, we knew he would need open heart surgery to save his life.  If we hadn't found out before he was born that he would need extra medical attention,  Things could have taken a turn for the worse.   We are thankful to our Drs , that we all knew what was going on with his heart, and knew what needed to be done to save his life.

*Congenital heart defects are the leading cause of all infant deaths in the United States

 When we found out about Mason's CHD at the same time we found out he would have Down syndrome.  The CHD he has is actually common in children with DS.  That was one of the leading factors (before our amnio) that pointed towards him having Down syndrome. 

*Almost half all children and adults with complex congenital heart disease have neurological and developmental disabilities


Now here comes the shocking facts of Congenital Heart Defects:

* Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.  

*More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime

 ( Mason is lucky to have been able to have his heart repaired at 5mo old, after being in heart failure at 5wks old.  If he had not had his surgery, he would not be alive today.  He life depended on that 8 hr surgery. ( longest day of our lives).  He will have echocardiograms, EKGs, and Cardiologist visits for the rest of his life.  He heart may need another surgery when he is older ( were looking at around 12 or 15 yrs old ). 

*There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them

We do know that Masons type of  heart defect goes hand in hand with him having Down syndrome, but they do not know the actual cause of his heart not fully developing. 

 
 
* In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD. 

As a Mother of a child with CHD, I often wonder why there isnt more funding, research, awareness, and public knowledge of CHD.   We knew nothing about CHDs, untill we were told that Mason had a heart defect.  Now we are making it our goal it educate as many as we can about CHD..... because the more people know, the more lives we can save.