Monday, February 23, 2009
Thursday, February 19, 2009
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
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
Friday, February 13, 2009
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.
Wednesday, February 11, 2009
Monday, February 09, 2009
Evan's 5th Bday party
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!
Friday, February 06, 2009
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.
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.
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