Swallow Study

For those that have not seen a swallow study, I'm sorry that you have never been able to see the amazing body work (or not work).

For those that have seen a swallow study, I'm sorry that you have had to watch the person you love go through one but hope that you found the same ahh in it that I do every time Aine has to have one done.

I've heard that there is this happy feeling that comes over a person as they watch the barium go down their throat and into their stomach, not into their lungs where it doesn't belong.

I've heard, never felt this happiness for Aine's most recent swallow study was a fail......

She was given applesauce with barium in it twice and aspirated it both times into her lungs.  No visible trace going into her stomach ):  they will be reviewing the film to see if any went into her stomach, but the multiple aspiration puts her back on the NPO list (nothing by mouth).

Now.... What does this mean for her future?  Really, just that nothing changes.  Se is still super lucky that she can sleep AND eat at the same time and not waste any precious calories eating.

I wish I could say more about it, but I don't have all the answers.  They don't know if it is because of the DiGeorge syndrome, lack of usage, palate issues, or neurological issues.  Maybe one day we will have more answers, but right now - it is what it is and we are blessed with every day whether it is filled with smiles or the case of the grumpies.

No words

Until I became a parent to a heart baby, I didn't really know that a human could process soo many emotions in the blink of an eye.

Sadness, fear, anger, joy, uncertainty , and rotate through those about four times in a five minute span and that is how I am feeling right now.

The reason?  Is very difficult to explain.

Since my daughter's birth I have met some of the most wonderful people.  Caring, loving, willing to be there no matter what.  I can truly say I have discovered what true friendship and caring is all about.

Sadly, I was informed I will more than likely have to say farewell to a wonderful person who has been there for our family through thick and thin and dropped many family moments to come and assist with a problem that would arise during off hours.

You may be asking, Why would I write a short blib about this....  The answer is Not to get pitty, but to ask for understanding during this transition that we will be going through.

The nurses and doctors that come into the lives of a medically fragile child become like family to us and when it is time to say goodbye it is heart wrenching.

I know that we will see them again, but that part doesn't matter.  Not yet, later however - it will mean the world.

Liam has taken up a new interest.

Construction work is AWESOME!!!

Running Buddy

We are excited to start a new friendship :)

We were introduced to a running buddy program through Facebook.  It is I Run 4.

They match kids who aren't able to run with people who are able to run.

Then the rest is history.

The kiddo gets to meet more people who are awesome & caring.

The runners get to run and find out more about the kiddos they are running for and their friends.

Talk about COOL!!!!

Well - Aine has officially been signed up with a runner :)

Her name is Lauri and we are excited to have her running for Aine!

Shawn is waiting for his running buddy and is excited to start running for them.

They are looking for more kiddos to join, and running are "patiently" waiting their matches.

New Wheels!!!

Aine has moved up in the mobility world!

SHE

HAS

WHEELS

!!!!!

And She Knows how to use them!