My Little Star

Derby week is over but, it sure was FUN!!! Our girls day at Oaks was a blast, other than the walk back to the car at the end of the day, oiy. I love my girlfriends - what would I do without you guys? We don't get out much but when we do, we always have a such a blast.
I took Evan to the Pegasus Parade on Thur. evening and we had a great time. We went and found a front row seat and set our chairs up. After a little while we noticed that the seats on the road next to us were reserved by one of the local TV Stations. When it was time to start the parade an anchor from Wave3, Connie Leonard came over and was doing an interview with a man off to the side of us. During the interview Evan and his 2 BFF's were dancing and hopping around. After the interview she came up to them and asked if they would talk to her on the camera when it was time and they said they would. She took them over to the camera and did "Live at 5 at the Pegasus Parade" - she asked their names and if they were having fun. They said their names but when asked if they were having fun the didn't jump up and down but gave a small little "yeah." I tried to make a few phone calls once she asked if they could be on but I only reached a few and didn't get it taped. I did get pictures though!

Derby Fun

We have been busy, busy, busy. We are in the middle of Derby fun. Got to love My Old Kentucky Home during these fun times. We all went to Thunder over Louisville and although that is not my thing, Evan LOVES it! We are heading out today to the Pegasus Parade. This is Evan's first time and I hope we miss the rain that is headed in. Tomorrow some girlfriends and I are headed out to the Oaks for a girls day. We are still fitting in baseball and work in between.

http://www.kentuckyoaks.com/2009/

Hopefully I'll get some good pictures to share here.

Tourist Guide from KY

My brother just got back from his 2 week vacation. Evan was so scared that his Munc was going to be attacked by pirates. It didn't help that Evan got the Disney Pirate playhouse ship for Easter. Munc you were the source of much playtime - rescuing you all from pirates! We had to tell Evan over and over that pirates were not in the Carribean - Mom too LOL. My brother called me when they were docking in San Juan and I googled where they were. I kept seeing this restaurant called "Barrachina" in all my searches. I told him about it and that it said it was the birthplace of the Pina Colada. They called me back and asked me to get them directions so I was looking at maps and directions from google to Barrachina. I told them when they got there to take pictures. I Love this one of you Munc! They told the waiter they had a tourist guide from Kentucky give them directions! Oh how I wish I was in San Juan sipping a Pina Colada instead of at work today!

Babe Ruth Little League Parade

Evan has played T-Ball for the past 2 summers and he is starting the Little League this year. It is big time, coach pitch and all! We have had a few practices and Evan thinks he has found his calling, LOL! We are looking forward to spending the spring and summer with some of our best friends - fun times! The kick-off parade was this past Sat. and Evan was so excited. He woke up and was ready to go - mentioned that his ear hurt a little but when questioned said it was okay. He didn't act like himself during the parade or the egg hunt afterwards and once we got home he complained again with his ear. I checked his temp and he was running a 101.9 fever! We went to the Immediate Care and confirmed ear infection. He hates the medicine they gave him. It is weird he can swallow with no trouble Digoxin, Lasix and any allergy meds. Give him an antibiotic and he struggles. Who knows. I think it is because they are usually thick and grainy. Poor guy.

Swingset

Evan has wanted a swingset for a really long time. At our old house there just wasn't room for one. We had promised him that when we moved that would be something we would do. We wanted just a standard wood swingset but... have you all seen the prices and the quality of most of them lately? We went to several local stores that carry sets and they seemed to be poor quality or very very expensive! We have lots of storms here and some of our friends have gotten these just to have them break the first season. We were sure if we went with one of the store bought ones (unless we were willing to spend $1000 or more) ours would be broke after the first thunderstorm it endured this spring. We knew that Eric's brother Davy had made one for his kids and Eric thought he could do it with Davy's help. Eric made a list of supplies and they headed off for the lumber and accessories on Sat. They spent all day working on it and had it pretty well finished by the end of the day. They put on the finishing touches yesterday. Didn't they do awesome? Evan is one happy little boy! Daddy your wonderful! Uncle Davy, your wonderful too! Pay no attention to the mud bath that we are calling a back yard! Our poor grass back there gets no attention and I believe we are going to have to put some mulch down to avoid some little boys looking like rag muffins everyday.

Old McDonald

This morning when I dropped Evan off at school his early care teacher had something to share with me. On Monday his regular teacher was out and a sub came in to cover for her. She said when they took them outside to play the sub came over to her and said that Evan cracked her up. She said that he told her, "when it is music time we always sing Old McDonald and Ms. Debbie lets me stand on the table and crow like a rooster." She told him they wouldn't be singing that today. When Ms Debbie came back they asked her what she had been letting Evan do. She said that 1 time in the very beginning of the school year they sang Old McDonald and she had one of the kids sit at the end of table and crow like a rooster and all the little other kids acted like chickens, that they acted out all of the animals. I guess Evan never got his turn and thought this was a good opportunity. He cracks me up.


I wanted to share something else since I had requested prayer. My Mom's BF son-in-law was found on Monday. Thank you for your prayers. Auntie I'm so thankful that John was found and will be at the Memorial on Sat.
http://www.msnbc.msn.com/id/29840125/

Ally's 4th Birthday and my BFF!

My neice turned 4 this past week and we celebrated on Sunday. Check out the pictures of her present and if you haven't already bought a tutu for the little girl in your life Kathy is AWESOME www.heart4hearts.com Kathy... Ally absolutely LOVED it as you can see in the pictures.
Ally is my neice because I say she is and because her Mom is like a sister to me.

Kelley and I have known each other all of our lives. Her parents moved into nextdoor while they were pregnant with Kelley and my parents had just been blessed with me!

From our first steps we were together. I have pictures from her 1st Birthday with me sitting there next to her. We have been through so much. From swimming with swim caps on (you thought it was cancer - it was just ear infections), to pulling each others hair fighting over Barbies, to bribing each other to come back out and play with candy, to eating your vegetables so we could both have dessert, to holding each other so that your parents would find us the next morning and wouldn't dream of moving, to finding that note in my mailbox when I was 8 written on Strawberry Shortcake notecard telling me that you hoped I found a new best friend, to realizing that 8 miles isn't that big of a move, to riding around on our bikes looking for frogs, to making up dances, to picking 4 things to do and making the other choose 1, to babysitting and sharing the cash, to boys, to broken hearts, to wrecking your cougar in the park, to bailing each other out of bad situations, to marriage, to heartache when we learned that not all pregnancies lead to babies, to Logan in 2003, to Evan in 2004, for being there every scary moment with Evan, to Ally, to moving to Florida and long phone calls, to moving back to KY, to now... we are Sisters and I love these kids like they are my own.
Kelley I Love you and always will. Thank you for being there for me through thick and thin. XOXOXOXOXO.

Who are we?

I a member of a Tetralogy of Fallot Yahoo Group and one of the members posted this with permission to re-use it. Thought you all would enjoy it.

Start counting... we're roughly 8 out of every 1,000 people (or 1 out of
every 125, if you want a number you can get your head around.) We represent
both genders and we are all ages. A million of us are adults, and about
800,000 of us are children.

We've made it through surgeries, hospital stays, infections, Endocarditis
(infection of the heart), pacemakers, and heaven know what else. We've given
gallons of blood, one vial at a time. We've fought back against tremendous
odds. We've been so sick that we've scared the world's best doctors
witless... and then amazed them even more when we've fought back.

We've celebrated our victories and we've mourned our losses. We know that
most of those who came before us died, including 14 of the first 70 to have
the Blalock-Taussig Shunt. We know that most of us shouldn't even be here
and so we live every moment as if it is our last - because it could be.

We're Cardiac Kids and Heart Warriors. We have an amazing inner strength,
but we are terribly fragile at the same time. We refer to our parents as
Heart Dad and Heart Mom, and we use those titles as Badges of Honor. Why?
Because they DESERVE them! They were the first ones to discover that a heart
defect doesn't just break one heart, it breaks three.

We work, we play, we pay our taxes and we live our lives. We're in your
community, in your church, in your school, in your office, and quite
possibly in your home. We move a little slower, do some things a little
differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects."

Steve Catoe
42 year old male with Tricuspid Atresia
South Carolina

My baby is growing up

My little baby boy is really growing up. He has slept in his own bed in his own room twice this week and is doing it on his own accord. None of us have felt wonderful since Saturday - the Ohio Valley is really attacking our sinus'. We have all been kind of quiet and needing lots of down time. On Sunday night, I was in bed reading and Evan decided that he wanted to go to his room and watch TV and he fell asleep and slept there until about 3am and came to my bed. Last night he told me he thought he would sleep in his bed but wanted someone to sleep with him. We told him no but that we would read and he was okay with that. He slept there until about 6am. He was really proud of himself and we are too! I'm letting him and his Daddy work on this transition as him sleeping with me is mostly my fault and I love my snuggle time with him.
Something I don't believe I wrote about when I did his bday post on things I wanted to remember is bath time. Every evening when I announce that it is bathtime Evan whines and asks for 5 more minutes. When I do finally get him to the bathroom and into the tub his mood completely changes. He sits under the spout letting the warm water hit him in the back and wants quiet - just sits there and enjoys it. When the water is turned off he lays down and soaks forever. He usually requests that the jets be turned on. Then when he is done relaxing he has a few little toys and he plays and plays. I get time to myself during bathtime - usually sitting on my bed where I can see him in the tub reading and he just plays away - making sounds for the toys. When the water starts to get cool he asks that I put in more water and when we say no asks for a few more minutes. Seriously... I think bathtime takes us at least a half hour. He is so my child.

Changing subjects and updating my last post. My Mom's bestfriends Son-in-Law went kayaking with friends last Wed. and was seen struggling in the water. Emergency responders and friends were there within minutes but could not locate John. The search has been extensive and sadly I report that his body has still not been found. We went to be with the family on Sat., you just wish there was something you could do... but there is not. Auntie... I know you read my blog and I want you to know how much we love you all and are praying that John be found.

http://www.state-journal.com/news/article/4540044

Prayer Request

I'm asking for prayer request for my Mom's Best Friends family tonight. My Mom's friends Son in Law went kayaking today in Frankfort with 3 friends and is missing. He is very experienced and I'm praying for him and the family. His 3 friends went back when they realized he wasn't following and found his kayak but not him. Someone passing over the river on the bridge noticed a kayaker struggling and called for help.

Rolling Eyes

Not much going on to report here. I had a meeting last week with Evan's teacher and she said that although he is very sensitive and wears his feeling on his sleeve that she does not have anger issues with him at school. All in all it seemed that he is good at school but cries more than the others. So... I've been working extra hard with him. Crying gets on this Mama's nerves! I Love him so much... it's hard seeing my little guy melting when his feelings are hurt - even a little bit. He has got such a tender heart.
On Sat. I had some girlfriends over and one of them has 2 daughters who are 10 & 13. I've mentioned them before because Evan is in LOVE with them and calls them his girlfriends, oiy. Last night I was telling Evan something and he looked at me and ROLLED HIS EYES!!! I cracked up. How can you not. He isn't really even rolling his eyes, he looks up and turns his head! I could tell he spent the afternoon with older girls, LOL. Thanks Olivia & Kristen for keeping him entertained on Sat. - he Loves you both!

UofL Dancethon

Heart Moms share your thoughts

I have something I want to talk to Heart Moms about. Other Mom's advice would be appreciated as well.

First of all we have been very blessed. Evan has flown through surgeries and caths and test with amazing colors. He is smart. He is built like an ox and eats good. For all of this we are thankful. We know many heart parents who deal with much more than I can ever imagine. I am so thankful. I understand that the concerns I have, have not been studied long. The reason is that it hasn't been long since kids born with a CHD have survived into life long enough to experience these difficulties. I am thankful.

I have expressed before that Evan is very sensitive. He is smart, he is good, he is loving but he is very sensitive. He loves to be around adults. This doesn't surprise me since he really wasn't around very many kids until he started preschool at age 3. He does well with adults in conversation and relationships. Last year at school he seemed to form a real bond with 2 of the kids. This year, I think that he is having trouble with developing relationships with kids his own age.
My opinion is that he has always been sensitive but, that has increased since his surgery in Oct. It seems that he cannot get ahold of his emotions. When there are kids over our house that are his own age and he doesn't like what is happening or feels something is not going his way his reaction is to cry and/or clinch his fist and scream under his breath kind of way. He stomps off in frustration and says, "whatever, whatever." In these situations I have been sending him to his room and then going in and talking to him about how crying about everything is not okay that he needs to talk it out. He listens. He apologizes. Five minutes later, same situation. He just doesn't seem to get it.
The last few evenings he has told me that his little friend in his class has been in trouble. That when she is in trouble he has no other friends. That no one likes him. That no one wants to be his friend. That he sits alone at lunch time. I asked him why and why doesn't he try to make friends. His reply - "I got some peace and quiet." I wonder if that is what was told to make him feel better for sitting alone at lunch. I don't know. He tells me that he asks if a little boy will be his friend and the little boy says no so, Evan cries. I tell him, who cares, I wouldn't want to be a mean boys friend. Evan doesn't get that. He wants to be friends or at least for the little boy to say they are. He was coloring w/ a friend and the friend seemingly to aggeravate him told him to stop coloring on his book and get his own, Evan cried. Immediately the friend smiles and says, okay Evan, you can color. I tell him who cares - find another book. He doesn't get that.
Maybe I should talk to his teacher and get her opinion. Maybe I should ask the Dr. their opinion. My fear is that this would label him and I would be encouraged to put him on meds. I've read in many many articles that heart kids are 4 times more likely to have behavioral issues. I have heard that heart kids parents stress can cause the behavior issues. I don't want to ignore that he is struggling but... is he? Is he just a sensitive kid that is going through a stage? Am I reading too much into this? Or... is this my heart kid showing signs of needing help?

http://tchin.org/resource_room/CHDSchool.htm
http://www.healthcentral.com/heart-disease/news-225191-29.html
http://www.medscape.com/viewarticle/572800
http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel51.html

February 14th Congenital Heart Defect Awareness Day

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace... today...
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.
Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.
Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.
Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...
Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".


Author - Stephanie Husted

It's today that we honor every heart that is broken,
Too many are gone now, some words left unspoken...
A good fight is fought but still many don't stay...
So we have all learned to just live for today.
I once spent this day with sweet love cards to give...
Now I think of the children, who fight just to live...
40,000 babies affected each year...
Inciting in parents the very worst fear...
The child you've wanted for so very long...
May never come home, for his heart is not strong.
Every second seems to echo an eternity...
Will my child survive this to come home with me?
I won't say it's been easy, I can't say it's been fair...
I will say through it all HE has always been there.
Yes, on Valentines Day I do celebrate love...
Today my child lives, and today that's enough.

Tomorrow, February 14 is more than just Valentine's Day...

Governor Steve Beshear has proclaimed February 14, 2009 as Congenital Heart Defect Awareness Day in Kentucky.

February 14 is all about raising awareness to fight congenital heart defects, which afflict about 36,000 infants a year and are the leading cause of death from birth defects. These defects can be both expensive and widespread. In 2004, hospital costs for congenital cardiovascular defects exceeded $2.6 billion. From 650,000 to 1.3 million people in the United States live with a cardiovascular defect they’ve had since birth.

In 2007–08, the American Heart Association invested more than $11 million on pediatric heart research. It has funded nearly 500 pediatric research studies nationwide from 2000 through 2008.

May all of the hearts around town this weekend remind you of the tiniest hearts affected by congenital heart defects. Thank you for helping us make a difference.

Proclamation Day

Evan's 5th Bday party

We had a blast at the bowling alley for Evan's party. This by far is the cutest pic of the day! My sweet, sweet boy.

Proclamation Day

We are going to be doing something exciting tomorrow! I had been talking through our local American Heart Association to the Governor of KY to proclaim this week as Congenital Heart Defect Awareness Week. About a month ago it was all finalized and Evan and a few of his heart friends were invited to the Capitol for the Proclamation signing and picture. Our heart team, Team Brave Hearts, will be heading to Frankfort tomorrow for this exciting event and will be meeting with our Legislators throughout the day to raise awareness. I know he is not old enough to think this is "cool" but... I do! Wish us safe travels and also that our kids hold up throughout the day. I keep seeing the 5:00 news live at the Rotunda with our kids screaming and running around after a long day of Legislator visits, LOL!

Celebrating 5 Years - Happy Birthday Evan!

Make video montages at www.OneTrueMedia.com

Celebrating 5 Years - Happy Birthday Evan!

Evan, you made our lives full of happiness 5 years ago. We Love you, our Little Braveheart.

50 Things I don't want to forget:

1. The way you always want/need to be near us
2. You love your blue puppy and he goes everywhere with you
3. Remember when you loved Bear & putchers just the same?
4. You still sleep with Mommy & Daddy and we love being close to you
5. You are so tender hearted and cannot understand when someone uses words to make you sad, you are trying to learn not to be aggressive in return
6. You have trouble on words with L's and T's... it is so cute... especially since your Shree bestfriends are Wogan, Awwy and Wucas
7. You have such a big imagination... you do not play with toys much but can make up anything... especially if you get Mommy & Daddy to play
8. After seeing Bolt this year you have claimed Penny as your sister
9. You seem to already be into girls and have decided that you are going to marry Olivia... are always asking if your old enough to date
10. You love to have company but once they are there you love to sit and visit with the adults
11. Star Wars is you and your Daddy's thing
12. Taylor Swift's "Our Song" is... our song... you tell me to turn it up and we sing it to the top's of our lungs
13. Ever since you were little you dance in your carseat by bopping up and down
14. You don't always know the lyrics but also like "Picture to Burn" you say, "whose really bad, why?"
15. When you play video games your full body gets into it, especially your legs - they take turns kicking out to the side
16. You Love school and have loved your teachers Ms. Tracy and Ms. Debbie you tell me all about your day and tell me Ms. Tracy and Ms. Debbie are pretty ;)
17. Your two best friends at school are Olivia and Blake - the three of you definately have a bond
18. You think BFF's Mom Kelley is also your bestfriend and her husband Chris is your, "brother from another mother"
19. Mamaw is your second Mom
20. You can only be one thing to each person... you are my baby, Daddy's little boy, Mamaw's sweetheart, Papaw's buddy...
21. You don't like eating at Mexican restaurants b/c of all the noise
22. Loud noises in general really scare and startle you
23. You Love Iced Coffee from Burger King
24. You have no fear when it comes to jumping. You do skydives off of our livingroom furntiure and are so excited when we go to the mall to do the trampoline bungee
25. You have decided you do not like onions, pickles or tomatoes and they better not be in anything served to you
26. You love your cardio and his nurses... they make you feel special
27. Your proud to be a member of Team Brave Hearts and often tell people you have a heart team and friends
28. You love Spongebob much to Mommy and Daddy's chagrin
29. You hate when I cry and are such a little sweetie when you think I'm sad
30. You miss our home in Bardstown and talk about it and cry
31. You miss our neighbor Jeffrey - whom we only saw across the street and waved... non the less you miss him
32. You Love pizza with pepperoni and pinapple and need lots of marinara w/ breadsticks
33. When you have nightmares you take a long time to wake up and realize your just dreaming
34. You want to look handsome when you think you are going to see a girl you like, especially Olivia and Kristin
35. You have always said Logan is your BFF and not so much his sister but just lately you have said that you Love Ally and that you are her BFF too
36. Your a movie buff and love watching and then playing them out
37. Munc is your one and only best uncle you say
38. The prayer you always say is one you learned from school "Thank you for the Lord so sweet, Thank you for the food we eat, Thank you for the birds that sing, thank you God for everything, Amen.
39. Recently when I was talking to Mamaw you got tired of us talking and took the phone and said, "We can't take your call right now, leave us a message after the beep... beeeeeppp."
40. You can eat the heck out of the Sunkist fruit snacks
41. He likes it when him and Papaw go out into the den aka "boys room"
42. You take pb&j, cheetos, peaches and pudding every day to school and you don't want anything different
43. We like watching Jon and Kate + 8 together at bedtime
44. A long time ago we started playing - Who am I? - during car rides and while eating out. You love this game and we all take turns - turn order decided by you - we have to describe someone and then everyone guesses who we are describing. After one go round you always say, "change up time" and then you change the order of whose turn it is. It's so funny.
45. Olivia and Kristen gave you a Gameboy before you had your surgery - you love it and Star Wars is your favorite game
46. You Love tape... asked for it in your stocking this year and for your birthday. You make everything from a little tape and newspaper or a cardboard box. Seriously... those are your favorite play things
47. Everyday Mamaw calls me when she picks you up from school and you always talk to me... if you have a bad day you usually don't want to talk.. one day your reply to everything was mmm hmmm.. and then giggle. Mommy - I love you Evan, Evan - mmm hmmm giggle, Mommy - are you going to tell me you love me, Evan - mmm hmmm giggle giggle
48. You definately think you are the boss or as you say sometimes, the king of our house and sometimes have to be reminded that your the kiddo
49. You Love Daddy's old style Nintendo and always want to play Mario Bros.
50. You LOVE knock knock jokes and your friend Lucas got you some Pop Tarts for xmas that have knock knock jokes on them. You have to have them for breakfast and we have to read the joke first. You remember them and tell them often and die laughing

Evan you are a beautiful gift that God gave us and we are so thankful for you. What an amazing gift that we were blessed with and there is not a second that goes by that we are not aware of the gift we were given.
Psalm 139:14 says that:
I will give thanks to you because I have been so amazingly and miraculously made. Your works are miraculous, and my soul is fully aware of this.

We Love You Evan! Happy 5th Birthday!!!

See a video montage I made to celebrate below.

Snow!