Lots and lots..... Part One

I have .... To be perfectly open, been putting this post off.

There are a lot of things we have to be thankful for, but a lot of things that are Not going our way.

As you know Aine had a swallow study in October and we were told to Stop giving her anything orally because of her immediate aspiration.  We were told that we needed to wait to talk to the ENT to find out what to do next.

Well... What happened next is Aine was sick for almost 8 weeks.  This is not fun with a heart healthy kiddo and even less fun with a kiddo who doesn't have a healthy heart.  She would start to get better only to get even sicker the next time.  Luckily we have been trained to take care of her and have most of the equipment to do this safely at home and monitor her extremely carefully that we were able to keep her home and get her better.

We stopped therapies, swim classes, gymnastics, and pretty much everything else during that time because she just couldn't handle it.  It was hard to watch her sleep All The Time, Cry all the time, and just not want to do anything.

To top it off, I decided to try a different diaper because they didn't have her diaper where I was and she ended up with a nasty diaper rash ):

We got finally got her healthy and were able to keep her cardiology appointment.  Thankfully her heart is "stable".  This means different things in different situations.  In our case it means that the pressures in her heart that we are watching haven't risen that much (awesome news), there hasn't been a ton more narrowing (awesome news), and we will be seeing her cardio dr again in 6 months.

Now....  This doesn't mean that there hasn't been changes, because there HAS.  Her pressures have gone up and the narrowing has continued, just not at the rate they were expecting it to occur.  This has gained her at least an additional 6 months knife free.  We are hoping she can go 5 years or more, but only time will tell.

When she has to have heart surgery again, she will more than likely have to have open heart surgery because she is too small to have anything other.  We are still looking at 2 more OHS because of her size.

Moving onto her size.  Since she hasn't grown much in the past year she has gone from the 5th percentile down to the 1st percentile.  This could be due to the DiGeorge syndrome, her heart, or ????.  Which causes a problem as mentioned above.

She has been moved from the c-pap machine to the bi-pap machine because her apnea needs more support than the c-pap was offering her.  She is doing well with it and for the most part seems to enjoy sleeping with it on.

I talked to her ENT and he has requested we try to give her water and see what she does as well as start a stim therapy with her.  This therapy will hopefully help her muscles thus helping her to swallow.  Tonight Brittany and I gave her water and she immediately aspirated it.....
I talked to her speech therapist and we are going to continue with the talker demos and once we are done with those we will start feeding stim therapy which is a grueling process.  We will be traveling to the clinic up to 4 times a week to work with the therapists in an attempt to help her learn to swallow.  During this time there will be electrodes hooked up to her throat to help stimulate the muscles in her neck.

I will be blunt - I am scared beyond scared of how she is going to react to this.  I know she wants to eat (or at least have the flavor), but I don't want her to be hesitant at all when it comes to food.

If you haven't read lots and lot part one, please do so before reading this one,
For some reason I couldn't post anymore to the first one.

So.. In talking to Aine's ENT, he said it is not common for a child to go backwards int heir swallowing ability, but it has been reported, so we will move forward with the therapies and see what happens.  No promises, no false lights at the end of the tunnel - just - try and see.

There are also a ton of unanswered questions which will hopefully come to light soon.
In a brain MRI, the damage that I feared became a reality.  Due to the lack of oxygen she does have grey matter, which could or could not be causing some of her delays - we may or may never find out the these answers.

During this MRI it was also discovered that there is probably a fusion between C2 and C3 which would be a sign of KFS.  They want to wait until she is older to determine if it is going to pose any problems for her.  KFS would answer many of the questions that have arisen about Aine.

And.... During all this, Aine has become self destructive.  If you see her forehead with scars or scabs on it, it is because she has done that - for some reason - unknown to us.  We are working on finding out why she is doing it, but until then the least amount of focus that is put towards the marks the better.

Liam has started his regression stage.  I was hoping that we were going to be the lucky ones that didn't have to go through it, but that sadly is not going to be the case.  He will throw tantrums, hit, kick, and cry.  We are working on it and it is getting better, but we still have our bad days.

We again ask for patience if we don't get back to you or don't call.  We think about everyone all the time and wish and pray that you are doing well but as you can see time is getting the best if us.  But this being said, don't hesitate to call, drop a line via FB, Pinterest, text, or any other way you prefer.  We Love to hear from you and appreciate it.

Now....  I must be a broken record.
If you are sick or have been around anyone that is sick.  PLEASE Do Not Visit.
With everything Aine has had to go through in the last couple months I want her to be home for Christmas.  She got to see Santa today and told him she was a good girl (she has been a GREAT girl) and that she would love to be surprised with something from him.

During the cold and flu season, if you are healthy and want to visit, you MUST have your flu shot.
If you are coming her, washing your hands upon entering, removing your shoes, and being ok with vinegar smell are a necessity also.

We again appreciate your understanding.

The Casey's

I would also like to send prayers out to some heart families that will be celebrating without their loved ones this year.
Baby Joy and Baby Zachary have been called back to celebrate Christmas in heaven this year.
We send love and prayers to their families.

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!

Half Marathon

I can't begin to tell you how proud I am of my family.

Liam and Aine are growing and becoming big kids right before my eyes.

Shawn has excelled and succeeded in his goal of getting healthy and running.

Over the next few weeks, I will be sharing these proud moments with you.

The First MUST Share moment......

Shawn getting ready for his first 1/2 marathon!

Shawn Finishing!

After we met up

GOAL: 2 Hours

TIME: 1:49:33 !!!

And to pass on the strength it took to 

sign up, run, and finish the race - 

Here are the beads that Shawn carried for

5 kiddos that are a part of the beads of courage program.

Like I said earlier, I can't even put into words how proud I am of my family.

Everyday I am amazed and love them more than the day before.

(Even though I can never figure out how it's possible :)

Through our entire journey we have grown in more ways than we could ever imagine.

We have met many new people.

We have discovered strength that we never knew existed.

We have felt great fear and conquered it.

We have found out what true will is.

We have seen true Kindness.

We will continue to grow and challenge ourselves - this is what we know now.

We will continue to focus on the present

As well as the future.

We have many more fearful times ahead of us, but we will conquer them.

We will continue to find strength and help others find theirs also.

We will do what we can to show others true Kindness.

Love, Compassion, Honor, Friendship,

Strength, Sorrow, Will, and

Kindness.

Thank you from Aine's Army!

There is soo much we couldn't do or learn if it wasn't for friends and family.

Time Away

Sometimes in life, you think that you have it all together to realize that you really don't.

That's when you must decide if you continue in the whirlwind called life or if you disconnect for a while and try to enjoy the little things you have been missing and get back on the track.

That is exactly what happened to me......   Which is why you haven't heard any updates on the kids, Shawn, or myself in WAY too long.

Don't worry - because I have most of it documented with pictures and am excited to start sharing the ups and downs that we have been going through.

HAPPY GOTCHA DAY BABY!!!!!

Two years ago today was a day of Many firsts!

After 3 months, Aine got to do some of the following for the FIRST time EVER!!!

Go Outside

Ride in a carseat

Sleep in her OWN bed

See A Dog

Sit with Daddy without a Ton of equipment attached

Play out of a hospital bed

 See a Cat

 Wear pretty dresses When ever she wanted

And.....

Get Hugs from her brother whenever the urge was there.

These last two years have been full of Various medical supplies

and LONG hospital stays

BUT>>>>>

We will continue riding on

and enjoying everyday that is given to us!

HAPPY GOTCHA DAY BABY AINE!!!!

Our Community Has Heart Walk

We decided it would be fun to go to the banquet the night before

This is the picture he took before we got Two ready 

to go to Grandma & Grandpa Casey

This is the view from Liam's seat

Surprising the kids and getting Liam into the pool a couple times 

could be considered a good or a bad thing...

This is how we started our day today

Luckily - This is how it turned once we got to the park :)

 This was Liam's Favorite activity

(Until someone unplugged it & it collapsed)

Here's the boys all ready for the 5k :)

Nick, Shawn, Justin, & Liam

Shawn and Liam getting ready to run the 5K

Holly getting ready to run her First 5K!

Nick & Justin getting for the 5K

Nick came in 2nd place!!!

AND........

Here are some of the members of 

AINE'S ARMY!!!!

Aine's Army was 10 people strong last year

This year

Aine's Army was 20 people strong!!!

Aine was NOT sure what to think of the ferret

NOPE - She didn't like it!

The bunny was ok....

Until it moved

This was an hour after we got home

This was 3 hours after we got home 

(I adjusted her shirt)

We would again like to thank everyone who helped make this such a successful year!

I am hoping that there are some other cool pictures

and there were many other cameras there :)