Small Tidbit

A little tidbit to get your mind rolling early in the morning :)

Did you know that there are approximately 35 different types of Congenital Heart Defects?
Me?  Nope!

After we found out that Aine would be born with a CHD we did a little bit of research.

Most of it was focused on her specific heart condition - Tetrology of Fallot, so little did we know that there are approximately 35 different types of CHD.

To me that is an amazing fact - 35!

To be blunt - I was one of the many that didn't even really know or understand that this was something that could affect anyone that was young, I thought heart problems only affected people as they got older.

I'm hoping that with this blog and the help of you we can spread the awareness that heart defects are very real and more common that most even realize.  Prenatal care and screenings are very important to help ensure the health of the precious packages we are given.

http://michigan.gov/documents/mdch/CHD_facts-COLOR_408738_7.pdf


Prayers:
There is a really brave kiddo in the hospital right now.  He has 22q11.2 deletion just like our baby girl, but he is having a really hard time right now and is fighting for his life.
We are all sending prayers and well wishes his way.

Let Heart Month Begin!

 

It’s the first day of February -

You all know what that means!  My facebook page and blog page is going to blow up with reminders that CHD is real and we live it everyday of our lives.

We will also be asking that you wear red on Fridays and Talk to people about why you are wearing red.

I’d like to add a little more fun to it this year.  If you have an Aine's Army shirt, we would like to see you wearing those at least once a week this month & talk to people about why you are wearing them.

We will also be signing up for the Lasting Imprint 5k walk/run, so if you want to support in any way (come walk with us, sponsor Shawn, etc) I will be posting details about what you can do and when our online link is up and running.

We are 1 in 100!

January Reflection

 

As I sit and reflect on the month that has just past, I really see and feel what I been trying to achieve for sometime.

The actual concrete realization that people come and go for a reason.  Some are with you for a long time, while others only a short amount of time.  But.. no matter how long that time maybe, there is a reason and you have to trust that in some way or another, it is for a good reason.  You also have to trust that those that enter your life your life and “benefit” your life will never truly leave.

On a side note:

Quite some time ago I read a note from a blogger mom – I laughed at the idea & put it out of my head.  With my current realization, I took her advise (now if only I could remember her blog address)  But she said…..

LIFE’S TOO SHORT TO MATCH SOCKS!!!

You know what??  She’s right!

So now I’m going with the statement:

ENJOY THE DAY – NOT THE LAUNDRY THAT GOES WITH IT!!!

Prayers:

Prayers to my dad – he’s been battling low platelets which is post-poning his much needed back surgery

Prayers to a fellow 22qr kiddo – he’s hospitalized right now trying to get a skin issue resolved.  They are anticipated him to be intubated for at least a week. 

Prayers to my pregnant peep – stay calm & hold that baby in.

Prayers to a wonderful family who is grieving a recent loss of a wonderful little boy.  Fly high little man!!

Prayers to H Sue – stay strong during this time & we are all there for you as you have been there for us!

Friday

 

I love when I can say that our Friday starts out wonderful because I like to believe that is how the entire weekend is going to go -

But what does one say when it starts out wonderful and then takes a nose dive?  UGG!  That’s what

I had two happy kiddos upon waking only to discover our little princess yawning, getting raccoon eyes, and starting to get sluggish

BOO!

So….  Off to dreamland with that little one with prayers that some c-pap & oxygen time (along with a meal at mealtime) will help and no crud is trying to take over her little body.  (The prince was not too far behind).

We’ve called into the big guns to check in with them and give them her current stats so they know what’s going on, now….  we just wait and see and pray real real hard.

The other bummer part of this, the reality of where we are – homebound.

No more:

fun little trips – anywhere

visitors

Coffee Shops

Playgrounds

and the list goes on.

BUT….  if we can keep our little princess at home, we will take it.

AND….  on the positive side – we don’t have to worry about going out in the cold

Prayer Request

 

As you know, we not only use our blog to give updates about our family, but also to spread good news & not so good news.

I know not so good news is never easy to hear or read, but I know a pretty cool kiddo who needs some massive prayers right now.

He is a fellow 22q kiddo with a big heart & I mean a BIG heart.  The doctors can’t do anything to help his heart right now and he needs to get over a nasty virus called MRSA.  (The doctors believe that he is responding to the treatment & that it is contained in the skin only – which is a blessing!)

But…. The other huge kicker is that he is retaining fluid.  This is BAD – VERY BAD for a heart person for many reasons.  He needs the diuretics to work and pull the extra fluid from his body which will help him breath, move, and sleep safely.

If you could send him some prayers it would be greatly appreciated.

Thanks!

Happy New Year!

Happy New YeaR!

We hope that everyone had a great holiday, Merry Christmas, and Happy New Year!
It's been pretty crazy around here with a full calendar for January.

I'll try to post some pictures of our fun times, but I didn't even get Christmas cards ordered this year - so we'll see how it all goes.

Christmas Spirit is all around!

 

This is been such a great week!

Liam had his first concert (Ohhh…. They were soooo cute!)

This would be him soo excited to get to his spot he RAN across the bleachers. Talk about heart stopping moment!

Waiting is Always soo Hard to do

 

He ended up being the “song announcer”.  (I’m not sure if it was and official thing – but he took the role of telling the parents & kids what song they were singing next)

THEN……..

We got to MEET……

SANTA!!!

I’m not sure what Aine thought at first…..

Then he asked them if they were good…

HMMMMM…….

(Note the finger placement on the kiddo on the left & the rolling of the eyes on the kiddo on the right & you decide what they are thinking

THEN….

Aine got comfortable & I think a little bored of listening to her brother ask for what he wanted & she started to fall asleep!

 

Thanks to the St. Bonifacius Fire Station for letting the secret out that Santa would be visiting them today & the nummy breakfast that followed!

Now the boys are off to swimming & Aine is sleeping (I think the crud finally hit the little one

 

& with the glories of the week – I would like to send a few prayers out:

Our Dear little “O” – Continue being your fiesty little self & cough that gunk out of your lungs so you can go home and spend Christmas in front of your tree!!

Mr. “A” – Please be able to work with the Dr’s to allow you no more fear.

Dear Abby – Prayers that you receive the answers that you need & that there is only positive answers.  Keep those smiles coming!