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
Wednesday, September 19, 2012
Tuesday, September 4, 2012
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!
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!
Sunday, August 12, 2012
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!
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!
Monday, July 16, 2012
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
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
Monday, July 2, 2012
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.
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.
Saturday, June 23, 2012
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 :)
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 :)
Sunday, June 10, 2012
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!
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!
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