We have a date...

We got "the call" today from Childrens Mercy Hospital. Mason is set to have his Open Heart Surgery on September 22nd. We will have to be there & checked in on Wed Sept 21st to do pre op.

I thought I was prepared & would be relieved that we got a date... but I feel worse knowing that my tiny miracle will be undergoing Open Heart Surgery in 3 wks.
I cried when I hung up the phone...the emotions hit me like a ton of bricks.

Right now we need some prayers for Mason:
That he stays well and healthy till surgery.
That he continues to gain weight
That he doesnt need to be hospitalized before surgery for meds (since he is maxed out)

Mason' Cause!!

A sweet friend of mine from childhood is helping raise some money for "STEP UP FOR DOWN SYNDROME" walk on Oct 29th. A percentage of the proceeds from this SCENTSY PARTY will go directly to our team (MISSION: MASON) !!!

This is an online party, so anyone can order from this party!

How to order (Start ordering now thru September 30):
• You will first need to go to https://aepauley.scentsy.us/

• Click on the party that says Mason’s Cause

• You will order directly from the website

• Please make sure you have your order delivered directly to you (shipping charges apply)


If there are any questions please contact:
Ashly Pauley
Independent Scentsy Consultant
Phone: 817-223-0312
Email: ashly.pauley@yahoo.com
Web Page: https://aepauley.scentsy.us/



THANKS FOR HELPING MASON!!!!!!!!!!!!!!!!!!

New Mason Pics

We got the boy's pictures done before we have to go into "isolation mode" for surgery. Got some good ones of him without a shirt...before he gets his battle scar.

Busy week ahead

This week will be a busy one...like they all seem to be now a days. Mason has a cardio appointment today at 1pm, but first has to go to the breastfeeding clinic for a weight check. then another weight check on wed, play date on Thursday (Colby loves his play dates) , then hopefully SOMETIME this week we should have Mason's surgery date. Praying that it is soon...poor baby isnt gaining weight very well now.

bless·ing

bless·ing –noun

1.

the act or words of a person who blesses.

2.

a special favor, mercy, or benefit.

3.

a favor or gift bestowed by God, thereby bringing happiness.



Have a happy weekend

A letter to myself

Looking back almost 7 months ago....I wish I could have told myself it would be ok...so here is a letter to my pregnant self



Dear Pregnant Meagan;

Although right now everything is dark & gloomy, I want you to know your going to be just fine . Your life is going to change, your going to get some news you never expected. The Dr.s are going to tell you that Mason has Down syndrome, but sadly that is not all of it. Mason will be diagnosed with a Cystic hygroma... they will tell you he wont make it. You will endure a pregnancy filled with a lot of unknowns. You will have procedures done that will scare you ...but you will be ok. You will fine you are stronger than you ever thought possible...and that Eventually you will realize your sweet baby growing inside is a fighter also.

I know it feels like you cant stop crying, but soon the tears will be less & less. Right now will most likely be the hardest part of your life. Sadly only Cory & you know how it feels, others will try to understand what you are going through..but they wont be able to. Its just something they will never understand. But know that they all love you & love Mason. That Mason will be getting prayers from all over the world. You will be humbled by all the people who don't even know you, who are praying for your son. Right now all you can think about are all the scary words the Dr.s have thrown at you.... Down syndrome, heart defect, cystic hygroma, 3% survival rate.... but in the end these words wont see so scary. The Dr.s are going to tell you to prepare for the worst. You and Cory will set up funeral plans. It will break your heart like never before....but take care in knowing that Mason will come into this world

There will be a time during this pregnancy where you will tell Mason that its ok, he doesn't have to fight so hard anymore, that he can go to heaven, That mommy will see him again when she gets there. To utter these words will be that hardest words you ever say. You will be ok in the end...I promise. Mason will surprise you all along the way. Dont count him out, he will prove everyone wrong. He will be the answer to all your prayers. So dry your tears, and try to enjoy your pregnancy. In the end...all will be ok.

Love
Your Future Self
Photos by GM photography (thank you again for the beautiful images)

Update

We are back from the hospital. It was a long day to say the least! Mason is home and is doing the same as before. He is stable and the only thing left to do is surgery.

They did a chest x ray again and showed a little bit of change since last time ( flooding of the lungs) but not horrible. They also tried 8 TIMES to get blood....momma was not happy at all! Mason cried like he has never cried before. Broke my heart. We had to adjust 1 of mason's meds though. We have to back down off of the Digoxin a bit because he is close to a toxic level since we keep having to increase it.

We meet with Dr. Goertz tomorrow morning and we should be getting his surgery date on Tuesday! They said there isnt anything left to do but surgery.

Mason is a fighter & he keeps proving that over & over again.


Thank you to all our family & friends for the wonderful messages & phone calls of support we received yesterday. It was wonderful to feel the love & support.

Pray for Mason.

Mason is showing major signs of heart failure again. He is to the point he can hardly stay awake but a tiny bit at a time. Were waiting for a call back from the cardiologist.

Were already maxed out on his meds & the only thing left to do is heart surgery.

New Toys!

Mason's newest toy arrived today! He got a Tumzee ! We have used it twice today and already LOVE IT!!!! He is actually trying to play with his toys for the first time (it helps that he can now reach the toys!). I love the T bar in the back so he doesn't slide down. We really hope that this helps his neck strength. He already is staying longer on his tummy than before (he would roll to his back before & now he cant roll away!)

Therapy...

After scouring for things ( mats, toys, ect) to help mason strengthen his neck and overall muscle tone... I have found 2 things that I think will help Mason.

First up is the product that was suggested to me by several other DS moms when I asked what worked best for their child.

Wingbo – Tummy Time Swing
Wingbo is a special and truly unique product which appeals to all babies in particular those with special needs.

Second is the Tumzee – Tummy Time Baby Seat***Update : Tumzee has been purchased! Thank you to the 2 lovely ladies who got it for him*****

and lastly.... I was told Mason needs an Ipad. NO JOKE. Apparently there are lots of benefits and learning tools & apps that are beneficial for Mason .....Im not quite sold on that one.

Next step is to win the lottery so we can purchase all of these right away! Ha ha! But seriously...Im going to figure out some way to buy them all!!


Also were sending out a prayer for Jonah... Praying he starts to gain weight as so not to have a feeding tube put in. (His Dad said he is healing well after surgery...just needs to start gaining weight again)

We work a little harder

Everyday I am Amazed.

Amazed by my sweet little miracle.

Some things dont come so easy for Mason. Most parents dont have to think twice about their child holding their head up...but we do. We work with Mason everyday to strengthen his neck & core muscles. We do certain moves & exercises to engage his muscles. We make it a game & its fun for him (most of the time). Yes its not as easy for us...but were enjoying every min of it. We rejoice in every triumph! No matter how small. And for us it has opened our eyes. Most parents take these milestones for granted...just assuming there child will do them. But we celebrate each & everyone!

In the end...I think we are better people & better parents for it. It truly makes you realize that life is a precious gift...not something to take for granted.

Mason in starting his early intervention. We met with his coordinator and will start his occupational therapy this week. We are excited to get him off to a great start!!!


MASONS PRAISES:
Mason is really progressing with his head control! In the last 3 day he has really started to master the bumbo seat! He is engaging his core muscles like he should and can now sit up straight in it & pull himself back up if he starts to slump a bit (VERY IMPRESSIVE)!! GO MASON!!!

Hopes for the future

If you would have asked me a few years ago , when Colby was born, what my hopes were for his future... I would have said the "normal parent" answer. That answer would in tell something along the lines of ....

Go to a good college
Find a good job
Find true love
Be a good person
Be a man of GOD
Be happy
Get married
Have a few kids...ect

Those and a few others are my hopes for Colby's future.

I would pray over Colby each night, asking God to watch over him , guide him , protect him, and help raise him to be the best he can be. To follow Gods path for him and let our faith in God be a guide for him.

Now since Mason has arrived, I have another little boy to pray over at night. But my prayers are very different for Mason. My prayers for Mason seem to last a bit longer ( trying to fit in all my gratefulness for him being here and our concerns for this upcoming surgery) I always start off with thanking God that Mason is here & healthy and then pray about what it to come. I still pray the same part about God watching, guiding, and protecting him ...just like I do for Colby.

Last night after the boys were tucked in their beds, I started thinking about what I would want for their future. While doing this, a bit of sadness fell over me. I realized my hopes for Mason wouldn't be the same as Colby's. We have always said that Mason will do everything he wants...just like any other child...just in his own time. But then it hit me, like a ton of bricks. Mason's future wont be like Colbys. No matter how hard we try , there are just some things he wont do.
So in turn, my hopes for Mason's future is this

I want him to be happy.
I want him to talk.
I want him to walk
I want him to be a good person
I want him to be healthy
I want him to be able to live independently.

Then there are things that still sting...know Mason might not be able to do.

Get married
Have kids
live past his 60s

Yes, it makes me sad to think Mason may not do the same things as Colby. But we realize that Mason is such a blessing to us..no matter what he does in life. We are proud of him. We will support him in all he does...and help him strive to accomplish anything he wants.

We have Mason's first Early Intervention evaluation tomorrow afternoon. Im very anxious about this evaluation. So far we have yet to "chart him" on his development (besides Dr. Nelson his pediatrician, and from her standpoint his is right on track, beside a bit of a neck control.) Now with having him evaluated...the will "chart him" and we will know where they place him developmentally. But were excited to get his therapy started and get him on the best track in life!

"These little hands will
grow up to be
big and strong and
helpful, you see.

These teeny-tiny little toes
will carry this body
that grows and grows.

This precious, sweet and
radiant smile
will help me go the
extra mile.

And deep inside, a
soul and heart
destined to be
special from the start"