Super Hero Emmett!!

Cardiology

Emmett had his Cardiology appointment this morning. It went really well! :) I was very impressed with how well Emmett did. He had a limited echo done and he did really great, we brought a movie and he just laid there and watched the movie. The echo showed that he has mild leakage from his Aortic valve and Mitral valve. Dr. Su said that they are not going to do anything to the Artial Septum, they are going to leave it alone for now. They are using the Atrial Septum for better blood flow and if the Mitral Valve's function ever slowed down then the atrial septum would still let the blood flow where it needs to go. He also said that they probably wont have to do anything surgical wise until he's older and that will depend on the leakage that he is having. And the most exciting news, wait for it..................... We don't have to go back for a YEAR!

Easter Sunday

Checkout what the Easter Bunny dropped off!

 Morgan said a couple of days before Easter; "I hope the Easter Bunny doesn't poop in our house!" 

Easter morning she looked at it and said; "The Easter Bunny pooped chocolate chip. Emmett don't eat it. It looks like chocolate chips, but it will taste like poop!"

Dinner and Easter egg hunt at Grandma Jennie's and Grandpa Ron's!

 Cute little munchkin!

 Morgan and Marshall 

Cute little dude!!

The Perry Easter Egg Hunt

We had our Traditional Perry family Easter Party today!

 Emmett started taking a few steps a couple of weeks ago. He was having a great time!

I just love this little guy!

 I love this girl!

Follow Up Neurology

Emmett had his follow up appointment with the neurologist today. Went over the results of the EEG that was done on the 15th, the results came back normal. Because it showed normal results it doesn't necessarily mean it wasn't seizures that Emmett was having. The neurologist is still thinking 50/50% chance that it is seizures. We just need to keep watching Emmett and if he has anymore episodes then they will put him on some seizure medication. We are grateful for the the test results coming back normal.

Early Intervention

The occupational therapist from early intervention came today to evaluate Emmett. He did such a great job and was having fun with everything. When the therapist walked in Emmett said: "Here to help Emmett walk?" The OT said for walking he is at a 12-18 month age range, but everything else he is right where he needs to be.

Weird Episodes

Emmett's been having some episodes that he would space out into space, breath heavily and his heart rate goes up between 120-130. We've talked with cardiology about it and since he's done this before and it is not his heart, our cardiologist referred us to neurology. Today we met with the neurologist, he said that it's a 50/50% chance that if it's a seizure it would be a Complex Partial Seizure. Also the reason he is not walking is that it's neurological. We go back March 11th for an EEG. If it's a seizure they will treat it with a medication. We have physical therapy coming to work with him to help with his walking. Please keep Emmett in your prayers. Thanks!

This is our awesome little "♥" buddy Mason!  

If you would be so kind, go to this page, like it and vote for him! Choose FIVE stars to give him the most points and you can vote once every 24 hours! Contest ends Halloween night at midnight!

Somewhere!

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…

This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.

And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.

Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see her face…

They haven’t got to hold her yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.

Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.

Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?

It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.

Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…

The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…

Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.

Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”

Author - Stephanie Husted

I'm Just a Little Heart Mom

I'm just a little heart mom,
Trying to get some sleep.
Trying to rest my tired mind,
But all I do is weep.
My heart is broken beond repair,

All I feel is utter despair.
My mind won't shut off at night,
Even though I try with all my might.
Tomorrow will be a better day,
That is what I have to say.
I have to belive it with all my heart,
Before my day will even start.
I have no clue what the day may bring,
It could be happiness or depressing.
I'm so tired, but with a smile on my face,
I accept my heart world journey with grace.
I have to be a super heart mom, the way its ment to be,
Because my little heart hero depends on me.

By: Chrissie Taylor (Kylie's mom)

Prayers!!

This is our cute little heart friend Kylie! She has been in the hospital for months waiting for a new "Lub-A-Dub" and has been declining. She is not doing good and needs the extra prayers! She is now in the CICU and is having a procedure do

ne on her heart today that can help her failing heart. If the procedure does not work, her family has been advised they should say their "good-byes" to her...... this little miss needs a miracle and FAST!!! We love you Kylie and Chrissie!

Have You Ever Wondered

Have you ever wondered what to tell you child about the scar they wear? A heart mom shared this and I loved it, so I thought I would share it.. Stephane from Nie Nie diaries was talking to Elder Holland... "As we talked, he told me to be proud of my scars. 'We look for Christ's scars because they are evidence of what he did for us. They will be the first thing He shows us when we see Him again. Your scars tell a story too. Although they may not make you feel attractive, they are a witness of a miracle, that God blessed you to live, and that you have accomplished very difficult things."

Awesome right? 
Our kiddos are miracles... They are evidence that there is a God. And even though they wear the scars on their body, I feel like daddy and mommy have accomplished difficult things too! Our scars are just invisible to the eye. How lucky are we, that no matter where we are in our journey, waiting for another miracle, living each amazing moment, or having loved a true miracle for even a short time.... We got it!!! We did love, we did live, we did enjoy!!! We are sooooo lucky.

CHD Poem

We've all watched our children intently...

Memorizing each line...

And let them leave our loving arms...

And prayed things would be fine.

We've paced the halls awaiting news...

And wondered just what lie in store...

We've flet our own heart's racing as...

We walked through an ICU door...

We've seen the child we love so much...

Struggling to overcome...

The lines...the cords...the monitors...

No thoughts...no words...would come...

We've prayed for an improvement...

We've laid it in God's hands..

We've cried...we've hoped... we've worried...

We've wondered of Gods plan...

We've learned just how a heart works...

each valve and artery...

we've asked a lot of questions...

we've faced each surgery.

And somewhere down this worn path...

We've met more families...

Who know exactly what it means...

To live with this disease.

We've smiled at every triumph...

And shared in every sigh...

we've prayed for a child that struggles...

And each family that must say goodbye.

Some battles are fought with bullets...

And weapons made of war...

While these are fought in silence...

Behind a hospital door...

We've wondered what lies in our future...

We've been thankful for just one more day...

We've stopped and watched with tear-filled eyes...

Our children...as they play.

We've struggled with ounces and weight gain...

Why won't my child just eat?

But heart mom's...we're a tough group...

We've learned how to face a defeat.

We've faced those moments...others do...

When life has got us stressed...

But it doesn't take long to remember...

That we are richly blessed.

We've taken on a whole new role...

One we wouldn't exchange if we could...

We know that life is difficult...

We hold onto all that is good.

God chose each of us carefully...

I do believe he smiled...

Some bonds begin with strangers...

And just one special child.

Author: Unkown

One of the heart mom's posted this and I thought that it was a great song to share (to listen to the song, you might have to pause the other music at the bottom of the page).

I love you Emmett!

A Shot in the arm for Emmett!!!!

Ugh!!! So the flu season is among us. While some of you might find this "overboard" or "harsh" to us it is not. To us I would explain it maybe a harsh reality. For Emmett's safety we are advising that if you plan on being around our little guy AT ALL, that you will get your flu shot. There is the assumption that if you get the flu shot you will get the flu, well guess what that is false. This is straight off of the CDC's website:

The flu shot: The viruses in the flu shot are killed (inactivated), so you cannot get the flu from a flu shot. Some minor side effects that could occur are:

•Soreness, redness, or swelling where the shot was given
•Fever (low grade)
•Aches
•Nausea
If these problems occur, they begin soon after the shot and usually last 1 to 2 days. Almost all people who receive influenza vaccine have no serious problems from it.

The flu would be life threatening to Emmett, and it wouldn't be a question of he might be admited to the hospital if he got it, it is a guarentee that he would be admitted and it would be to the ICU, I don't think YOU would want to be the cause of that, would you?

Because of the risks if you don't have your flu shot, we recommend that you don't come to our house this winter. I'm sorry that may seem rude but I'd rather seem rude and avoid the hospital this winter than hold my feelings in and be at the hospital away from Morgan for weeks because Emmett caught the flu. Also we will only attend family events such as Birthdays, Thanksgiving, Christmas Eve, Christmas, or New Years Eve parties outside of our house if everyone is well. If you plan on holding him or getting close to him we will be asking if you got your flu shot and if you didn't, we will politely ask that you just wait until the summer to cuddle with him. The more people who get the flu shot the less people who get the flu, crazy concept right? So really it isn't only for Emmett's protection but for the rest of my family and also your own family's. I know alot of you have kids and babies in your homes so do it for them also! So come on all the cool kids are doing it and get a

SHOT IN THE ARM FOR EMMETT!! ♥

Life's A Roller Coaster

This is so true! This goes great with what my little family has been through this past year.

Emmett is 1!!

We made it!!!

I can't believe that my baby boy turned 1 year old today. It's crazy how fast time goes by. Some times it feels like it just zipped right past me and then I think back to Emmett's hospital stays

and remember the long days and weeks that we had waiting for surgeries and watch him

struggle through his rocky recoveries. We are so blessed to have our little guy in our lives.

Here are Emmett's stats for 12 months:

Weight: 16.13 lb. (0% for his age he isn't even on the chart.)
Height: 28 inches (10th%)
Head: 14.5 (5th%)

He has been through so much in his first year.

-2 open heart surgeries.

-6 Cath Lab procedures.

-Many heart echos.

-MRI

-EEG's

-Ct Scan

-Many chest x-rays

new born.

11 months old.

I know he will do great things in his life, because of the strong determination he has.

Fun Things About Emmett:

-Emmett is such a happy easy going little guy.

-He loves his best buddy and sister Morgan.

-Loves food and haven't found anything that he doesn't like to eat.