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!