Who is ready to " STEP UP FOR DOWN SYNDROME" ?????

Who is ready to " STEP UP FOR DOWN SYNDROME" ?????

We are gathering donations towards our team for our sweet Mason Dean !
There are several ways you can help!

1. You can simply make a monetary donation.
2. You can shop at any of the following online parties, where proceeds go towards our team funds.

We have several parties to choose from!

For Origami Owl Orders _ www.kenziescreations.origamiowl.com select the walk for Mason Down syndrome fundraiser from the party tab at checkout

Flourish with Danel Wolcott Orders- momsflourish.net/dwolcott " Please contact me by email of what you want to order, and I will send you an invoice to pay from. My email is danel@tvnav.com"

Pampered Chef Orders - www.pamperedchef.biz/pamelahunt Then the click on shop online. Enter either Down's syndrome or Pamela hunt  

direct donations - http://www.stepupfordownsyndromekc.org/fr/FDFDS/2013StepUp/MissionMason


THANK YOU!!!!!!!!!!!!!!!!!!!! 

What Down syndrome at 2 years is like for us

Like with any child , the 1st year to the second has huge changes!

Masons second year has had huge changes for him as well!  Hes growing by leeps and bounds! 

Mason has conquered walking
Mastered running
And can climb just about anything he can get his leg up on.... add in the super flexibility. .ahe can climb a lot!

It seems that Mason has blown  his therapist away with his great gross motor skills.  He surprises them all with how soon he walked (for a child with ds) 
And now how effortlessly he runs and climbs.

We laugh when new people on his therapy team come and are like " whoA!!"  (Yup! Proud momma) 

But as with saying with children with down syndrome. ."they are either walkers or talker"  it couldn't be any more true!!!

Yes, Mason says a few words and does signs... but compared to other kids with DS who are not walking/running... he is  far less vocal then they are! (We got a walker not a talker )

So we met with Masons team of therapists,  we turned our focus from gross motor to fine motor and our main focus ...SPEECH. 

This momma wants to give him the best chance at communication !! I want him to be able to express himself  as easily as possible.

So were bringing in our speech therapist every week and we follow her suggestions till we reevaluate each week with new plans and goals.

Nothing will hurt a mothers heart as watching your child be behind while others thrive. 

We get so excited to see mason doing super awesome and surpassing his goals on the down syndrome chart. ... but then you throw him in the mix of typical learning peers.... and I can see where he is behind.  Some days I have to hold back the tears.  To see how many words the peers his age have, makes it seem like mason is so far behind them. 

But around here we keep it as positive as possible!   So instead of crying,  this momma is pushing Mason... pushing him to learn as much as possible.   So if we have to do more therapy , we will. If I have to get more fluent in sign language,  I will.  If it means I need to set aside daily therapy time, consider it done! 

I will not sit back and do nothing ( because we haven't yet) and we will continue giving mason all the opportunities as we can !

So, to finish up ...

Besides a few setbacks in speech. .. mason acts like a typical 2 year old.

So we see where we need to improve and we will continue to make progress!

Slowly but surely is the motto this year! !!

Where have we been?????

WHERE HAVE WE BEEN?????

Our last post was in March!

Well we have been a tiny bit busy with this one...

 Logan Drew made his appearance a month early on April 26th at 12:16am

 He spent 30 days in the NICU due to premature lungs

 We celebrated Mothers day in the hospital..

W

FINALLY we got to take him home!

Mason and Colby are adjusting to the new baby... 

but really it hasnt bothered either of them!

They love him

Now here are some Mason pics to make up for the delay in updates!!

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.

 

A baby after a child with Down Syndrome

As many of you may know , We are expecting a little baby boy in May.

When we got the surprise that we were expecting again, We were a bit shocked to say the least.   We had talked about possibly having a 3rd.  That maybe a younger sibling would be good for both boys.  But when we got the positive pregnancy test.....  I was a bit freaked out.

We found out at our 20 wk ultrasound that Mason had cystic hygroma, a congenital defect (we were told most likely Down syndrome), and a heart defect. 
Our world as we knew it was shattered.
We were told he would not survive.

We started planning a memorial service for him ( I remember calling funeral homes asking how they do a memorial/ burial service for a baby...Thinking of this still makes me cry).  We let our family know what we wanted done , so when the time came, we wouldnt have to think of what to do.  

For the following 14wks after that day , we waited.  I had 3-5 appts a week.  All to monitor how he was surviving.  All we could do was sit , wait , and pray that he would pull through.   Finally we started getting better  news (always small bits).  We finally got to start planning his nursery and not planning a funeral. 

I went through so much emotionally during his pregnancy, that once he was born, I did not want anymore kids.  NOT because Mason has Down syndrome, but because the pregnancy itself ( cystic hygroma, heart defect, pre term labor, premeture birth, ect) was just so hard.   Over and over I kept telling Cory, no more... I just cant do it again.  

The first year of Masons life was a whirlwind.   We had heart failure, Open heart surgery, therapies, dairy allergies, ect.... You name it, we went through it!   Also through that first year, my heart took a beating.  I had to deal with the emotions of my child having to endure all these things, while others just seemed to skip through life without a care.  They had babies who didnt need life saving surgeries, or therapy to learn to sit, or be on medication for the rest of their lives.  
And looking back now, my heart was bitter.  It felt unfair at times, that we had to fight to get him here... while others just continued on with their perfect life. 

I really think it took a good year for my heart to heal. 

Finally once my heart had healed, I actually started listening to my husbands requests..
He wanted another child.

His reasons for having another one were good, but I wasnt convinced yet.  
He said it would be good for Mason to have a younger sibling to help push him.  That It would be goo for our whole family.
In my heart I knew he was right... but I was still so traumatized by Masons pregnancy that I just didn't want to do it again.

After a few more months, lots of praying, and lots of long talks, I felt like we might EVENTUALLY be ready to try again....

well God had other plans in mind.... We got a big surprise In September!  Im pretty sure God took it into his own hands ( because I may never of been 100% ready). 

With the excitement came a whole new set of fears....
Would this baby have a heart defect? Cystic hygroma? Down syndrome?

We knew that if we were to have another there were risks....
We have a 1% chance of the baby having Down syndrome, Cystic hygroma, or a heart defect.  We have that 1% because we have a child with those conditions.  So there is a chance it could all happen again.

Now the Down syndrome isnt was was scarring us, it was the heart defect and CH.   Those were the big things that threatened Mason's life in utero.   ( We know that down syndrome is not a curse, and that if we did have another with DS, we would be just fine!)

So I pretty much held my breath this whole pregnancy.
Never getting fully attached, always wondering if this would happen again.

Well last Wednesday we had our " big ultrasound".  In the same room we had Mason's ( where we learned all that was going on with him)   I was so worried going in, trying to brace myself for bad news.   The tech (HI Jen!) who did Mason's sono did this one as well.  I felt like I was right back in the same place and time.   My nerves were on edge as we began.   Jen asked how the pregnancy was going, how mason was doing. ( I think she could tell I was really nervous) As she started, the screen fill with a beautiful pic of our sweet baby... and I smiled.  I knew right then, no matter what the outcome was, all would be ok.  As I am watching the screen, she starts scaning the heart.  There in front of my eyes is a perfect 4 chamber heart, beating with a perfect beat.  Thats when the tears started,  I couldnt help myself.   That tiny heart was one of the biggest worries I had, and to see it , beating perfectly... words cant describe.   The rest of the sonogram went smoothly and Jen pointed out everything as she went along. And when she was done, she said the baby looked perfect.

Those words brought some sort of comfort ( no heart surgery, no lifetime medications) but not excitement.  We did not cheer that this baby wouldn't have Down syndrome, but we were simply relieved to have a healthy baby ( no heart surgeries!)

So while we feel blessed that this baby seems as healthy as can be, you wont find us celebrating that he doesnt have down syndrome... Why , you ask?... because we know its a blessing , not a curse.

Picture Post Update

 

 We have been busy ( I think I keep saying that on every post) but its my goal this year to be a better blogger!  We will see how long that last!


Here is what we have been up to:

Mason is allergic to Dairy ( As in everything that has milk, whey, or dairy protein in it) So we have to be very careful in what we give him to eat.   I mostly eat dairy free with him.  I leave out dairy in our meals when i can ( Colby and Cory are not always fond of that )  But we have found a few "sweets" he can enjoy that are safe for him to eat!

Almond Bark covered pretzels

 

And oreos....

 Both are very messy but we let him have them every once in a while ( right before bath time).


I was looking through old pics on my phone and did this comparison... What a change in just 1 year!

 Christmas brought lots of new toys and I was pretty adamant on what was on Mason's list.  I didnt want toys that wouldnt benefit him.  I wanted things that would encourage the skills we are working on ( Fine motor).  So I was kinda strict on my list...but I think it will pay off in the end.  Plus our play room isnt cluttered by 303049308984 toys that light up and make noise! (PS the "cube" in the first pic was the best present for Mason!  He is doing so good working his fine motor skills on it ) 

He loves books

  (This is actually Colbys toy from Aunt Jenny but Mason loves to ride while Colby pushes him)

His peep peep eggs were a BIG HIT!!

 

Colby enjoyed the holidays as well!  He got a big boy bike this year! 

 I leave you with a few pics of what our days have been looking like...
Houston we have a CLIMBER!

 And then the next min he is sleeping like an angel ...