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!

Winter Fun

 

Even though the roads may be bad & no one wants to venture out into the “Winter Wonderland”, going out and having some good old fun in the snow will bring out the kid in anyone.

Luckily Liam and Shawn were healthy enough to get some time outside.

This is what Liam looked like from inside the house (he is on the lower patio).

Here they are attempting to go down our little hill  (It didn’t work out too well   I mean both the picture & and sledding part.

So… Shawn Jumped on -

That didn’t work out too well either

So….

Back to building their fort they went.

That is – until the kids from up the hill started sledding, then it was time to try the old sled again.

They had a good time & will probably be adding to the fort as winter goes on, but for now – this is what we have

Let’s Give this a Whirl!

 

 

I was just informed about a program that will allow me to update my blog even when I’m not able to have internet access.

Pretty cool if you ask me!

So…

Here is some fun things from our last hospital visit (find out more details about Aine’s procedure in the last post

Back from surgery and just needing some time with her blanket.

 

Liam is in his Don’t take my Picture phase.

 

We asked her to smile

I forgot her glasses in the truck – the nurse gladly handed her over so Aine could watch a movie.

 

All ready to go home – watching the nurses from the floor leave.

Back home & ready to play!

 

I don’t think this is what she had in mind though.

All Solved!

 

Waiting for the delivery orders

Here they are!  Aine just had to answer the phone!

 

All in all we are having a good day – We’ve had a good start to the week & are looking forward to another good day

All Filled UP!

Friday was a BIG day for the Casey household.
Aine went into OR to see if we could get some answers - LONG awaited answers.

The procedure took about an hour and a half and produced some answers!!!  YES some ANSWERS!

We were informed that her lungs look good - which I couldn't be happier about, but - Yup
BUT...
We found out she has a laryngeal cleft and a rather large one at that.
So...

He filled the cleft in as much as he could and told us to watch for any results occuring over the next 2 weeks.  (Decreased coughing, decreased secretions, increased swallowing, etc)

The "fix" may or may not work, only time will tell - so we will continue to monitor and see how it all goes.

Now - the downside of this is, that if it does work - it's only temperary :(  The upside is that if it doesn't work - it's only termperary.  The gel will naturally dissolve and allow the cleft to be visible again.

If it works, we will discuss further options with the ENT - so.... that being said, more updates on this to come at a later date.

More OR news:
We also found out that her airway is obstructed and it is due to her precious heart - which is pushing on it causing the obstruction.  She may or may not grow out of this issue - so until then, C-pap & oxygen - But... we have some answers :)

Hope all is well with you and wishing you a merry christmas, happy holidays, and new year :)

Halloween

We definately overdid ourselves this year (well with the costume that is - because my decorations were a little on the shy side, but I'll be fixing that :)

Liam wanted to BE Thomas the Tank engine - so.......
What you have been waiting for - Thomas.......

 And his Princess....

It was a very good night.
Aine started to hold her hand out when people would open the door (she wanted nothing to do with the pumpkin)

Liam and Daddy went out by themselves after tumbling and got to do some more trick or treating.

Thursday will be another big day - PICTURE DAY!! 
First one for Liam!

Results

We were pretty stoked when we pulled into the ENTs parking lot to discover we had made it the full 24 hours with the probe in Aine's nose.

They pulled it out & called us back on Tuesday.  We were happy to find out that her nissen is working the way it should be (no excess amounts of bile coming back up), and that her acid levels are where they should be. So....  Where does that leave us???

Another trip to the OR -

We will be finding out how her lungs are doing & what her esophagus looks like.  They are hoping that they will be able to find out what is causing this nasty coughing.  AND that they will be able to do some kind of "fix".  As with everything, we will not be holding our breath, but will be praying that they can help the little munchin (or as I called her yesterday - my little wart) out.

Liam's school report went really well.  He is doing really well I school & is getting along with the other kids.  

He will be moving up in swim classes and is really excited because he will get NEW goggles :)

We'll be getting pictures up of the kids after Halloween:)

Hope all is going well, and that you have a safe and happy Halloween!

Prayers list:
Baby Joy - stay strong and show them what a name can do!
Little O - prayers that they can find out what is going on & quickly!
All affected by the storms - may you get to a safe place quickly & without harm!
All the businesses affected- may you feel good in your decision to close & take care of your extended families!
All those that need a little lifting!

Tests

This has sure been a big week for us & we have more to come.

Baby Aine got some blood drawn to make sure that everything is going the way it should be. So far no news - so hopefully that means good news.

We also had a probe placed in her nose that she wore for 24 hours. It was placed to record the Ph of her saliva and verify that her nissen is working. We should find put the results of this Monday or Tuesday.

She had a very good session of OT/PT this week and is becoming more confident with moving her body.

We saw her gen ped and discussed many of the things that are going on along with this ultra crazy flexibility things she has going on. (she can literally fold herself in half - its crazy to watch). He did some research and has not found anything that links it to her 22q diagnosis, so we will at some point be seeing rheumatology to maybe gets some answers. (or at least some things to check off our list).

Liam will be starting another tumbling class this Wednesday and is super excited for Halloween. We decorated the house and as he says we made it Spoooookkky!

His first conference is coming up this week, so we'll see what the teacher has to say about his progress his school.

Internet Rocks!

Yup -

We got it all fixed and are ready to rock and roll the cyberworld.
Liam can't take his eyes off of Thomas Misty Island & I can't take my eyes off of the computer screen :)
Shawn's not home yet, so he's not involved in the fun & Aine - well she's sleeping.

Enough about my lack of cyberworld attention & on to the updates you have been looking for ;)

AINE:
She is doing pretty good considering she is breaking one of her final teeth. Once she is done with this one she will only have her 4 two year molars left (Thank goodness for that!).
She is taking this tooth pretty rough. Gurgly tummy, loose stool, and chewing on EVERYTHING! But.... I keep hoping that the poo is an indication that she is getting some of the saliva into her ------- TUMMY!!!

She didn't technically pass her swallow study that was done this month (you can't spit the barium at the doctor and expect to pass), but they were able to determine that she is protecting her airway! YEAH BABYGIRL!

She is strong with sitting up, but wants nothing to do with crawling, rolling over, or walking. She Hates supporting herself or even thinking about supporting herself, so we keep working on it.

She is doing well with her OT/PT appointments and is continuing to grow, so we can't complain there either.

We have also put her into swimming & she is doing wonderful! She is at home in the water & doesn't really ever get upset while swimming.

She has some more tests and Dr's appointments coming up next week, so I will talk more about those then. (She is getting some kind of scope put in her nose, a biopsy, and an 18 month checkup).

LIAM:
Another rockstar in the making :)
He is doing Great in both swimming & Tumbling.
Very confident in both :)

He is doing well in preschool & has two good girl friends and went on his first bus ride to the fire station (on his First field trip).

We have conferences in a couple of weeks - so I'll know more at that time :)

SHAWN:
He completed his first 10k and beat his goal time :)
I'm soo proud of him!

I'm not sure what he is planning on doing next, but I know it will be great!

I will post pictures later (hopefully tonight after the kiddos are asleep), I'm going to go watch Misty Island with Liam :)

Hope all is well!

Prayer list:
Miss Abby: She was admitted to the hospital - we're hoping there isn't any rejection & she can go home tomorrow
Cameron: He needs to go home - he's having a hard time keeping his stats up.
Liam's family: They are doing well after he received heart wings, but a little pick up & prayer are always nice :)
LD - Prayers that your kiddos tests come back that the throat clearing is just that - no more reflux, errosion or any of the other things you are concerned about.

Congrats to:
O - keep up the good work!
Nancy - Happy Anniversary & many more to come!
C - Keep working hard!

I know there are many that haven't made it to the list today, but you are in our thoughts & prayers.
If you want/need to be added, please let me know!

More Tests

Aine has been doing well with her therapies.
She seems to enjoy the attention from otherrs & likes watching her brother be silly :)
She was cleared for swimming, and has been to two classes. She is doing great and is very comfortable in the water.
Which brings me to the next part of her story :) we will be habing a swallow study on Friday to tell us how she is developing. After which we will discuss with the ENT when she should go under to have the rest of her throat checked out & see if there is anything else going on on & if anything can be done about her cough :)

W us waiting for to put her under water.

Which brings me to the next part of our lives...... the LONG awaited swallow study!a. We

lack of internet

I'm having technical difficulties with the internet right now.
I only have access via my phone, so I will do my best to get small updates to you as I can.

Sorry that they will be kinda slow for a little while.

Thanks for all your conntinued support!

August

I know I've said it before - but I will say it again - Were does the time go??

We have been super busy since the last time I posted & I will do my best to not let time lapse like this.

Aine has had her ups and downs since the last post -

She has started to bear weight on her legs & is pulling herself up to a stand (she is not using furniture, but will grab ahold of your hands & pull with her might to get up and then give you the Biggest smile you've ever seen.

She has also started to laugh - it's super cute & I make her do it all the time, but the silly thing is; once she sees Shawn she will do anything in her power to not laugh.

She is still refusing to roll over ??? but is working on sitting up from laying down so it's progress on some level.

We're still doing OT/PT with her, but it has been pretty sporatic because of her health and other concerns but hopefully we can get that back into full swing soon.

Liam is also growing by leaps and bounds.

He will be starting Pre-school in Sept. He's super excited to start & can't wait to meet his teacher.

He got a metal in tumbling class last week & is pretty happy about that.

He jumped into the pool yesterday and swam back to wall by himself! Huge accomplishment (He was swimming with a noodle just the other week).

He has also started working on playing the violin :)

Shawn is still preparing for the 10k that is coming up for special olympics.

Now for the "downs" I mentioned earlier....

Aine has gotten some tests done & may have some further testing done, I don't however know what at this time because I'm waiting for the phone calls to come on Monday.

She has delevolped a rash that looks like mosquito bites. When they show up they come in batches & these batches have showed up 3 times now.

A biopsy of one of the spots has been done & they have narrowed the cause down.
They have not given me a "final" diagnosis, but sound pretty sure that it is a syndrome called Sweet's Syndrome.

I don't know a ton about the syndrome yet & I don't know what this mean for Aine, but what I can tell you is this:
1) It is NOT contagious
2) It is reoccuring
3) The spots hurt when they errupt (but she will not show you this)
4) It is Not curable :(
5) She will have this for the rest of her life
6) It will scar her

As with any of the other things that have made Aine who she is - this is Not who she is, just what has made her the strong little girl that she has already become.

So... The question comes - why do I share this piece of information if I don't what you to think about it when you meet & see her?
I don't want knee jerk reactions of pulling away - she doesn't understand them..... she's a baby.
I would rather receive questions than stares
I would rather have you understand than fearful of asking question.

So... That being said - ask - I'll do my best to answer & if I don't have the answer, I'll do my best to find it.

Prayers:

Little Liam Lyon - We pray that you do well on the "home" vent so you can be transported to Cinncinatti when they are ready for you!

Vivica - We pray that the right nurse walks through your door & that you continue to do soo well with your heart transplant (prayers for the donor family also!)

Prayers to all those that need them - big or small - allow them to be answered!

He's At It again!!!

Shawn has decided that he would like to continue running k's.
But.....

This time he is upping the anti to a 10K!!!

We're soo proud of him & are doing whatever we can to help him reach his goals.
I have started to run again and am working on setting up accounts to help promote him and his $250.00 goal.

He will be running the Dave Ryan 2012 Special Olympics 10K (There is also a 5K if that interests you)

If your interested in finding out more about it, you can follow the link below.

Thanks!!

http://daveryan.kintera.org/faf/donorReg/donorPledge.asp?ievent=1010349&lis=1&kntae1010349=7554FB970E804CE289F8C5E63A7E958E&supId=362861741

Busy month ahead

Now that we are reaching the 6 month post op mark Everyone wants to see our Baby Aine. ENT, cardiology, gen ped, cranial facial, therapy and possibly more.

Tomorrow marks our one year anniversary for bringing baby Aine home, so we're excited for that :)

We're all doing well.
Liam is doggy paddling on his own & doing most everything in tumbling with little to no assistance. Oh yes.... And enjoying every minute of it ;)
Aine is getting bigger everyday & working on sitting up by herself along with rocking back and forth.
Shawn is training for a 10k that is for the special Olympics. I believe that will be occurring in September so if you would like to join him just let him or I know & we will also continue to post more information about it.

It's soon to be a Year!

It will soon be an entire year since the first time Baby Aine got to:

Be outside for the first time
Ride in a Carseat for the first time.
Sleep through the night without getting poked, prodded, and just plain bugged.
"see" her house for the first time.
Be able to be picked up, hugged, rocked, cuddled - anytime she wanted.

These are just a few of the firsts that will be having their one year anniversary on July 3rd - for that is the day that we brought our tiny little baby Aine home for the first time!

I think back to that day and I actually wonder how we did it. All the lines, all the feeds, the diapers, the unknown tears, the unknown cries, the separation from my kids, and the list that never seemed to stop. Then I think about how grateful I am that we have been given such a wonderful gift - a gift of life to cherish, teach, and help grow into the beautiful little girl that she is growing into.

I also think back to all that both the kids and Shawn & I have accomplished in this last year.
Bringing home a new baby
Learning all we are able to about Aine and what she needs as a baby
Teaching Liam all he wants to know about Aine and the world
Growing as a family
Liam learning to run, jump, swim, roll, and do all the things a kid should know and love how to do.
Aine learning to sit up, smile, giggle, start to roll over, and hold herself up on all fours.
There are soo many other things that have happened in the last year that I can't even begin to write about all of them in this short post - but you have been hearing about many of them as the days and sometimes weeks went by.

Aine's First Time playing in the sand.


Liam showing off his left handed chopstick skills :)


Life is GOOD when you have a dog to rest with


Playing softball with the boys (until Rocky stole the ball!)


Nick MY Boy - I love you!


Mommy - Baby Aine's Broke!!! (Yes - his words exactly)



GOTTCHA BABY GIRL!!! Aine's First Day home - July 3rd 2011! 1 day shy of being 3 month old.



In this short re-visit back to a year of successes in the Casey Household, we would like to thank you for being a part of it. Every smile, laugh, giggle, hug, thought, prayer, tear, fear, and most of all LOVE makes every minute worth it!



Special Prayers for the week:
V - she's a special girl who's waiting for a heart. She's had a kidney transplant and is now praying to stay healthy.
Abby - We pray that you can keep the fever away & keep your white blood count where it should be. Keep smiling!
All the families that have been affected by the storms in Duluth - we send our prayers & good wishes to you!

If you are part of our Facebook - there are some pictures from the 5k we did up. I will be posting pictures here also :)
We liked doing the 5k soo much that we will be doing more in the future - so we will keep you up to date on when, where, and all the details and we get them :)

Spread Too Thin

That is the song that is on the radio as I type & it sure seems to fit how I feel about right now.

Liam had his last swim class today and will be moving up to the next level next saturday. He's really excited to start his NEW class next week & can't stop asking when he gets to go. He's also excited because that means mom & him get to go pick out another bead for his band (he has been asking for a dinasour bead, so I'm guessing that's what he's going to be getting.
He had 2 weeks off of tumbling & it sure is showing that he needs to go back, like last week - he is bouncing off the walls, beds, couch, chair, and the list goes on & on.....
He's really excited that he can now play in the water outside, but can't wait for winter so that he can go sledding (I prefer summer, so I'm hoping it stays warm for quite some time).
He's growing by leaps & bounds which is making him really frustrated. One day he can walk under something & the next day he is bumping his head. He now has to watch out for door handles because he hits his head on them ;(
He's doing really good with Aine & shows that he wants to be around her ALL the time (even though he tells her to go away all the time, he has to lay right on top of her).
We are also starting to work on riding a bicycle! Shawn lowered the seat, left the training wheels on & off he went! He still wants to pedal backwards (which are the brakes on this one), but he will get the hang of it. That is as long as he will get back on it after his little spill.

Aine is growing & leaving her baby look behind day by day. Her leg rolls are starting to go away, she is getting stronger and stronger, and really starting to show more of her personality.
She has mastered sitting on her own, is getting 8 teeth in (yup, it is NO fun for her or the rest of us), she is working on holding herself up with her arms, she is starting to really figure out the whole rolling thing, and is starting to get mobile when she is on her back. She LOVES to play & LOVES to be involved when Liam and I are playing. Cars & trains are turning out to be her favorite thing, unless she is getting ready for bed & then she has to have pinky & baaab (baby).
She is really starting to babble & if you listen closely you can hear her say: dadda, mamma, babba, & baaab
She has also started the transition from infant formula to big girl formula. We're hoping that it all goes well and she can handle both the increase in fluid & the food transition.

Aine is also doing really well in therapy. We are currently working with the school system, but are also planning on starting a medical based therapy program so she will be getting more days of therapy each week.

Liam and the kids at a Birthday Party


Liam after eating a cupcake


Liam's Metal for Tumbling Class


Could they be any cuter??




Some of Aine's Beads of Courage


Liam helping string Aine's Beads of Courage


Playing around on the computer


Yup - Like Mother, Like Son... I am SOO Proud of him :)


All Smiles!








Some of Aine's Beads of Courage All Strung


Liam's Beads all strung



Fireman Liam


Liams Bunny - he names him Billy Bunny


I hope all is well with each and everyone of you.

These are some of the events that have happened with us in the time since I last updated you. We've been busy - most of it has been good, just busy.

We would like to throw a couple of congrats out while we are here!
CONGRATS on graduating Rach! We know you'll do Great when you start college
CONGRATS on the wedding Katie & Jeri! Many More Happy years to the both of you!

We would also like to send a few prayers out to those that need them right now.
The Frazier Family: We are praying for a fast recovery & smiles to come quick!
Summer - you and your family are in our thoughts & prayers. We're here for you if you need anything!
Vivica - We pray that your perfect heart is just a heartbeat away - stay strong little one.
Levi - Little Levi - Stay strong & fight the fight. You are a CHD warrior & that alone says alot about You!