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!

Further information

I didn't give much of an explanation as to what DeGeorge syndrome or 22q.11.2 deletion is in my last post.
I will continue to try to add information as I go. It took us a while to fully understand it, so we will do the best we can.

Please keep the questions coming, it will only help make the blog better and answer an pending questions you or others may have.

DeGeorge syndrome is known by other names but the most common is 22q.11.2 deletion. It is as it states, the deletion of part of the 22nd chromosome. It has a different effect on every person that has this particular deletion. Some people would never know that they have it unless they are tested while others are very severe and need constant lifelong assistance.

This being said, it doesn't seem that you ever have all the answers as to how things will turn out, but hey... I dont know how things are going to turn out for me, so I guess it evens the playing field a little bit.

What do we know about Aine???
1) Her heart is considered on the Very extreme end of the spectrum
2) She will need some time to "catch" up to kids her age. It's kinda hard to learn about muscles and how to use them whn your in hospital bed for the first 3 months of your life.
3) she Will need additional surgeries on her heart. How many? We don't know
4) She is calcium deficient
5) She can not eat by mouth, must use a g-tube and only time will tell if that will change

What do we Not know about Aine???
Way more than we know.
****How the deletion will affect her in the future
The problem with this answer is the list is so long that it is hard to list all the possibilities & since it is easier to deal with them as they come to the light we have chosen to not think about the list of "could be's".

Where do we go from here?
We continue forward, spread information and knowledge to those that are interested in finding out more & cherish the time and support that we have.

This is just a small insight into the deletion, I will continue to add more as I can & will see if I can add a
Website which is very insightful. But as I said earlier, please don't hesitate to ask questions. None are too small & they all deserve to be answered. The contact button will go to my private email, so ask away.

Thanks Again for your continued support,
The Caseys

Explainations

Thanks to all that have helped "create" this post because as of lately people have been coming forward with some Wonderful questions & comments. All of which help us answer your questions and keep them coming. They also help explain what is happening in the Casey household along with WHY they are happening.

Some of the questions and comments that have been on my mind lately are:
Aine is now referred to as the "Mystery Baby". No one has seen her, just heard about her & seen her pictures :)
Why can't she really go anywhere when she can go to the Dr's office?
When will she eat by mouth?
Why can't she eat by mouth?
Why can't she play with other kids?
Why are you soooo worried about whether or not kids have had their vaccines & when they have had them?
Your gaurded
That POOR baby!

Well - as I said, these are some of the questions & comments that have been on my mind lately and I have been thinking long and hard about how to answer at least some of them. To be honest, the only way I have thought of is to re-start at the beginning. Some of this information will be a repeat, some you may not know. You will see that we Have been gaurded about our daughter, Not because we felt that you would not understand, but because we don't want her treated any different than you or me. She's already had a rough start to life & we only want it to get better, but sadly that is even an unknown.

The beginning:
Shawn & I were very happy to find out that we were pregnant with our second baby. I don't think Liam fully understood that the baby would be staying but he was still excited (remember I did daycare - so the kids went home :)
We didn't know exactly how far along we were so we scheduled our first Dr's appointment and they did an ultrasound right away for us to find out that we were 10 weeks along.

Now.... For a "normal" pregnancy, this would be the coolest thing EVER!!! An ultrasound 2 Yes TWO weeks earlier than most!! But in our case, this was only the beginning of the hardest pregnancy we could ever imagine for we were told that Aine had a cystic hygroma. Which means that she had a fluid filled sac attached to her body. It is part of the subcutanious section of your body, so they can't just remove it. Since Aine's was soo large they immediately referred us to MFM for further testing with no gaurantee of fetal survival.

Once at MFM, we were informed that they would continue to monitor our little one, but that the cystic hygroma was more than likely caused by a heart defect and that due to my age they wanted to run tests to verify that it wasn't caused by a genetic problem. Of course we agreed and went through the CVS test to get some further answers. The first batch of tests which were run at 12 weeks gestation came back negative, and informed us that we were having a girl! Now... Once again.... in a "normal" pregnancy, this would be the Coolest thing EVER!!! Finding out at 12 weeks that you were having a girl! But honestly the happy news was short lived as now we had to discuss whether we wanted to find out what could have caused the unknown heart condition or if we were going to possibly wait until birth to find out. We opted to wait to see what heart condition she would be born with and then pursue the common causes because this could and would alter the way they treated her after she was born.

At 16 weeks, they were able to determine that Aine would be born with her heart condition of Tetrology of Fallot. A four part problem that can vary from mild to severe. They would not be able to tell us how affected her heart was until later. We were sent for a fetal echo for verification which came back as a positive for Tetrology of Fallot (TOF). We were sent back to MFM for a consulatation.

During the consultation, we were asked if they could un-freeze my cells to do further testing, to which we said Yes. They were looking for specific things with the main thing being DeGeorge Syndrome or also known as 22q.11.2 deletion. This is a common chromosonal deletion that causes TOF. She came back showing that she was "positive" for DeGeorge Syndrome. So.... what does this mean????

1)The DeGeorge Syndrome caused her heart to develop differently (TOF).
2)The TOF caused her to develop a Cystic Hygroma (which ended up saving her life)
3)The TOF caused her to not process my amniotic fluid correctly which ended up causing her premature delivery.
4)The premature delivery caused certain things to be emphasized at birth and others to be more difficult to deal with at birth.

So... what does this "new" information mean and why are we sharing it now?

Mostly because it is very difficult to be "gaurded" and explain why, what, when, how and all the other questions that come up (or maybe don't come up).

Now that we have "summed" up some further information about our precious little girl, on to answering some questions/comments that have been on my mind.

The truth of the "Mystery Baby"
Aine has been kept out of the lime light for many reasons all of which go back to her heart condition and chromosonal deletion.

She spent 3 months in the hospital & when you finally leave it's pretty scary to invite anyone into your lives to see your new bundle of joy.

There are still many things that are a mystery to us, so we just go day by day.

DeGeorge AKA: 22q.11.2 Deletion
The DeGeorge Syndrome has caused things to occur in Aine that a "typical" Child would not have to deal with. There are many different things that can happen with 22q kids, but they don't neccessarily have to happen. Each baby is different - no doubt about that. There are things that we will not know until she is older and there are things that we have already found out. One thing that we know for certain - 22q.11.2 deletion or DeGeorge Syndrome is just a Name - it's NOT Aine. It has helped create who she is and who she will become, but it does not change who you know her as..... The beautiful little girl who loves to smile, hold toys, blow bubbles, and stare lovingly at her big brother and daddy. Ready to learn and try new things.

Aine has been at least temperally tagged as immunocompromised. What does this mean? Per the freedictionary.com: "Incapable of developing a normal immune response, usually as a result of disease, malnutrition, or immunosuppressive therapy". Which in Aine's case it means that if she comes in contact with a child or adult that is sick, she will more than likely get this illness. So???? you may say, this is a normal thing for any child - it builds their immune system! In a "typical" child, Yes - but in a child like Aine - NO... since she doesn't respond the way you and I do - She WON'T build immunity because she catches a cold, flu, "bug, etc; she will more than likely end up in the hospital with a lung infection or worse.
This brings me to the next thing. Vaccines..... To a parent who has a child that can end up in the hospital in a blink of the eye, knowing who your child is in contact with is VERY important.

Here are a couple examples:
A) You as an adult have a funny cough - you feel ok, no fever, no headache, just this silly little cough.
You come and see Aine....
Cough on her.....
We find out that "little cough" is actually Whooping Cough!
How do we find this little detail out? Because Aine is in the hospital with Whooping Cough.

B) You do the right thing and get your child vaccines. Which include some live vaccine (MMR, FLU Mist, Chicken Pox, etc)
It has been 4 days since they got them (they will shed the LIVE virus for up to Seven days)
You all come and see Aine...
They touch, goo, gaa, etc over her
She starts getting sick & we bring her into the ER room to find out what's going on.
We find out she has measles :(

C) You opt out of vaccines for your kiddo
Unknown to you, your child came in contact with another child that was carrying Measles
They can pickup the disease & harbor it.
You come and see Aine...
They touch, goo, gaa, etc over her
She starts getting sick & we bring her into the ER room to find out what's going on.
We find out she has measles :(

This coming to light - these are a few of the reasons she is not in contact with a lot of people. We have pending tests which should be back soon to let us know how her immune system is coming (she gets some yucky shots to protect her until she is safe to start getting the ones that other kids her age get).

Why the Oxygen?
It takes about 6-8 weeks for the lungs to fully heal after an infection. When you get an infection, you are more suseptible to getting another infection (or the current infection getting worse). Since Aine ended up with a lung infection, her lungs needed time to heal so we took her home on oxygen. Not only did this allow her to get the oxygen she needed with less work on her body, it also helped her entire body because she doesn't deal with oxygen deprivation. She doesn't use oxygen during the day any longer, but it is on hand should she need it.

Why can't she eat by mouth & when will she start??
Since Aine was born early, the muscles in her throat weren't fully developed, and having DeGeorge didn't help the situation :(
They found out at the hospital that she was unable to keep food down and was aspirating it into her lungs so they put the G-Tube & Nissen into place. This helped her thrive & get the nutrients she needs to be able to grow.
So.. when will she be able to eat like a "typical" kiddo? I honestly don't know - the answer could be never. She may always have to eat via a tube - but this does not make her any different than you or I. It makes her Aine - the girl who doesn't have to waste time chewing her food. The girl who gets to run and play while she is eating without fear of choking. The girl who can sleep, eat, and dream all at the same time. With that being said, there is no reason to feel sorry about her eating through a tube - if every kiddo was born with a tube, life would be a little easier when it came to that nasty tasting medicine :)

That POOR Baby
This I must say is the one thing that bothers me the most when it comes to Baby Aine. She may not have had the smoothest start to life, but she is one of the strongest people I know. I have been told that I am very strong person - but I am nothing in comparison to my daughter. She has been through 3 open heart surgeries, multiple general surgeries, transfusions, hospital stays, and the list goes on and on but she is here with us. She is happy, she is growing, she is thriving, she is learning, she is sitting up on her own, and she is most of all Loved by everyone that comes across her path. If you didn't know that she had a bad heart you wouldn't think of calling her a "Poor Baby" which is the way we prefer it.

Decision
As difficult as the decision has been, we have decided to share all this information with you to give a better understanding of Why, What, When, How, etc. We will always try to answer questions as honestly and openly as we can. We just ask that you not feel sorry for Baby Aine or Liam. Liam has a better understanding of what is going on than most adults and they are both wonderful kids, love life, and just want to be kids.