Aine’s New Bows

 

I LOVE going to mail and pulling out FUN packages instead of the everyday things.

Today we received the bows that I won from Everythings Ducky Boutique.  I was excited when I won because we got to pick out the items that we wanted, which was SUPER hard to do.  Way too many cute things!

Liam and I spent a good hour looking and picking, looking some more, picking some more and finally deciding what we were going to get.

This was the end result!

 

One HAPPY little girl!

She is wearing one of her new bows (or eyeglass holders if you want to be Aine correct

Liam decided to try to help me show you what this one looks like.

Guess we need to work on modeling skills…

Then we put on the next bow

(Note the “help” in the background)

Finally –

after mommy getting poked & my assistant getting bored or assisting.

This was my solution…..

We are super excited to use these on a regular basis and think it’s awesome that we won.

If you want to check out the other designs she has, she is on: http://www.etsy.com/shop/EverythingsDuckyBout?page=2&order=price_asc&view_type=gallery

What do you do?

What are you supposed to do when you have to drive to get to a hill for sledding?
Make one of course!!
Shawn and I spent a couple snowfalls making this (Shawn did most of the work :) and then he taught him this….

Comments

As much as I didn't want to have to add a "confirmation word" to my blog for questions, comments, etc to be added I needed to change the status.

We have been getting a lot of spam added to the blog and I don't want that.

We do however love hearing from you and getting questions, comments, and the likes - so keep them coming and we will keep on blogging!

Hope your weekend is going great!

Braces

 

Aine has been doing great with all of her various therapies, so a visit to the ortho and PM&R doctor were in order.

The response from the doctors didn’t really come as a shock to me:

Because when your feet look like this:

They are bound to say it isn’t healthy.

So…. The outcome – Aine got casted for SMO’s.

We should be receiving them in a couple of weeks and I will post pictures of her cute little feet at that time

Heart stuff

I haven't been doing too well with spreading the CHD awareness this year :(

Since CHD is a HUGE part of our lives, it seems strange to me that more people don't know about it.  But in all reality, it shouldn't because when we were trying to conceive both our children we didn't even know a problem could occur with the heart.

I read a heart auntie's blog on a regular basis and she is Great about spreading the word during CHD awareness week and she made a great statement about being angry that people say they are not worried about their children being born with a heart problem because it doesn't run in the family.  We are all here to say that it doesn't matter - ANYONE can have a baby with CHD.  
I entered one of her contests & WON!  Aine will be receiving a bunch of bows for her glass holders - so I'll be showing them off once we get them.  (ok - so that was a little side note, because I won & you should check out her blog and ask her some questions for a chance to win a necklace).  But off my side note - one of the messages I sent her added to her comment on her blog.

The biggest thing that makes me cringe - so.....   when is she (Aine) going to get better?  When is this going to be All over.  Um.... Never!  Aine will always have to be careful with what she does, Aine will always have to have her heart checked - by a specialist, Aine will always have to be careful with what she eats, drinks, plays, etc, etc, etc.  She will also Always need to have continued surgeries, physical therapists, etc, etc, etc.  Appointments are our norm, pokes & prodes are our norm and now - casting is our norm.

So....  Why do we all flood everyone with information everyday & push it even more during this week?  So that babies that need the extra help will get it.

Angels

This post has been hard for me to write:

There was a - some would say little boy, others would say young man, while others would say teen that earned his wings today.

He like many of the other CHD kiddos fought most of his life to "be healthy" or - better yet, be as healthy as he could be.  For you see, even though most of the CHD kids that I have seen or met pretty much always have a smile on their face, light up a room when they walk in, know just how to lay their hand on your shoulder or face, and have the ability to cover their scars - they are always in some way or another fighting.

Some will be fighting to keep their hearts beating, while others will be fighting to keep them from beating too fast.  Others, fight for each breath or just to keep a "simple" bacteria or virus out of their body.

It can be a scary world, a happy world, a sad world, but it will always be a unique world and a world that is difficult for someone on the "outside" to understand.  Why we look over our shoulder and cover the mouths & noses of our loved ones when someone sneezes, why we wipe the handles of our vehicles before we get in, put sanitizer on our hands after we close the doors.  Sometime a new "norm" can get the best of you.

You may ask - why do I put the last part in, I bring this up all the time.  Well, anytime a baby, child, teen, adult with a CHD earns their wings it is easy to fall into a very protective mode, so please understand if you see these actions.

As for the smiling angel above - you will be greatly missed and have been an inspiration to all of us!
May your parents find the peace that they need and know that we will all be there for them.

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!