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!