Career Day

I feel like I've been horribly neglecting this blog. I have just been so busy. I have been checking in on all of my blog friends although sometimes I don't leave a message I'm still checking!
We had our 4th Annual Team Brave Hearts golf scramble last Sunday and it was very successful. We also had our annual bookfair with Usborne and Pampered Chef this past Thur. night. In between I've been working under lots of stress and taking Evan to school and helping with homework and not to often cooking dinner (I know, I know.) My work is changing so much - I know I'm going to miss the way things have been for the past 7 years. We sure have had it nice. :_(
Evan is still loving school. I'm so proud of him. I was really concerned with how the transition to elementary school would be for him and I was pleasantly surprised. Evan has also started counseling with a counselor that works with kids at the hospital where he had his surgeries. Evan has been very emotional since his surgery in October and very afraid to be alone at any time. I think he has done just awesome and was hesitant to voice these concerns but also didn't want to regret giving him an opportunity to talk to someone. More on this to come - we have only had 2 appointments.
Yesterday was Career Day at school. We found some kid scrubs and Evan became Evan MD Cardiovascular Thoracic Surgeon! He looked so cute!!! His little heart friend that goes to school with him was also in full Dr. gear. His Mom took pictures of the two of them together so I'll post those once I get them. Enjoy the pictures of Evan yesterday before school!

Heart Walk

We are gearing up for our 5th Heart Walk. Our 4th Annual Team Brave Heart golf scramble is September 13th at Quail Chase Golf Club. If you would like to make an online donation you can do so at:



http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=296536&lis=1&kntae296536=4E6C49EC2F874059936C745B02053AB4&supId=140845641

Star of the Month

I wish I had a little more time to update lately. My work has been crazy and very stressful. I really pray that things calm down soon.
Since school has started I changed my hours to be able to take Evan to school. I'm getting home later in the evening, so no updating then either. I'm thankful for the morning time Evan and I get though so changing my hours was worth it. My parents pick him up and he loves that since he isn't getting as much Mamaw and Papaw time as he is use to now that school is in session.
Talking about school... Evan LOVES it! I can't be more proud of him for getting up day after day ready for school. We worked very hard to prepare him for this and I think it paid off. I have to say though I really think the fact that he has an AWESOME teacher is a big part of his school success. We got so lucky to have one of Evan's BFF from preschools Mom as his teacher. She is the best and Evan just loves her. There is also some amazing people on the staff at his school and I'm excited to be involved with such a great place. He has gotten green everyday although they said he does like to talk... A LOT! He was awarded Star of the Month at school. He came home yesterday with a pin that said Star of the Month and was so excited to tell us that his picture was on the wall. This morning he asked if I would walk him in and take his picture. I'm so proud of him! My little man who is scared to be in a room by himself is at school and loving it.

Disney Approved!

Evan's cardio appointment once again showed no change! We are so thankful! The Dr. said he felt comfortable to approne our Disney trip scheduled for mid October. Evan and Dr. Mcomber did a high five to this news. Dr. said if he had to predict he would say they would do a cath around Christmas to attempt to stent the donor. I'm updating from my phone as my laptop is giving me a headache so... more details to come. Two months to Disney!!!

Cardio Appt.

Say a prayer... Evan's monthly cardiologist appointment is today at 4:00.

The Kissing Hand and School Days

Evan absolutely Loves Kindergarten! He is so excited when he wakes up and can't wait to get there. He has a crazy memory and tells us EVERYTHING that went on when we pick him up! It is so cute...
On morning #2 he asked if I wanted to take 2nd day pictures and I said sure. He was wearing his new tennis shoes and said they gave him magic powers. I told him to show them to me and I would take a picture of that. The pictures are of him doing cartwheels down our driveway!
Last night while in the bath he dumped all of his bath toys out. I reminded him that he would have to pick them all up when bathtime was over and he said okay. When it was time to get out he asked for help and I said no... he gave me this long speech about how I must not understand how hard school is and that his voice hurt from singing in Music, that his feet hurt from gym, his ears hurt from the teacher, his tummy hurt from his lunch, etc. I laughed and hugged his wet little self and helped him pick up - I'm a sucker. He was a sweetie after that - we read Will - God's Mighty Warrior and cuddled.
Around 5 this morning he woke me up and asked for my hand and I gave it to him and he kissed it. I closed it and told him I got his kiss and he said that I was supposed to put the kiss on my cheek. He climbed up into bed with us and went back to sleep. I asked his teacher if they had read a story or something about that and she said yes that it is called The Kissing Hand. What a cute story. http://www.teachingheart.net/kissinghandideas.html
His teacher told me that today they are going to make gingerbread men and while they were gone to lunch the gingerbread men were going to run away, LOL.
He called as soon as my Mom picked him up and said school was "great"!
"Mommy... we made gingerbread men today and while we were gone washing our hands they ran off.... we searched all over the school for them. There were clues... one wall had some icing on it where they had ran past it. We searched everywhere and then we all cried because we couldn't find them. When we got back to our classroom they magically were back!!!"

Evans 1st Day of Kindergarten

I can't believe it!!! I dropped my baby off at real school this morning! He did AWESOME! I think it really helped that one of his BFF's from preschool - Olivia - her Mom - is his teacher. Parents if they choose can walk their kid in this week. We walked in and he found his cubby and his seat. There was a picture they could color - I have to add that Evan was the only one at his table that colored in the lines and wrote his name on his paper. He did ask me to stay for a minute - seemed in his eyes that he could be emotional. I stayed for about 15 min. and asked if I could leave and he said yes and gave me a kiss and a hug. I walked down the hall past one of his heart friends room and was going to peek in. Little guy was facing the door and ran for me when he saw me - he was upset. He asked to leave with me - said he didn't want to stay there all day. I told him that his Mommy would be back to get him soon - he said - right after lunch - and I said soon. I asked him to show me his cubby and his seat and he did and calmed down a bit. I went back to Evan's room and peeked in and his was coloring and fine. I left but had tears in my eyes - what a bittersweet moment to leave my little braveheart and his heart buddy at Kindergarten. Can't wait to pick him up and see how his first day went.

University of Louisville Collegiate Chorale & Cardinal Singers

A sense of pride washed over me when I saw this article in our paper.

http://www.courier-journal.com/apps/pbcs.dll/article?AID=2009907260303

This is about my college choral director and the choir I was a member of for my 5 years of college. I miss those days and the way he expected no less than the very best of us. I for one hated to let him down. Isn't that the definition of an awesome college professor? I no longer find the time to sing although I'm thinking it is something I should do for myself. I'm much happier when I have that outlet and it's been too long.
So... Congratulations Dr. Hatteberg and Cardinal Singers on your 2 first place awards at the World Choir Championship in South Korea!

Found a few You Tube clips of them from a few years ago singing pieces we had sang.

http://www.youtube.com/watch?v=iHbsqyS2Df0

http://www.youtube.com/watch?v=GfvRRGjJoFo

http://www.youtube.com/watch?v=Pn8odm6LnSw

Pray for Elliot

They were not able to remove Elliot's tumor yesterday but had to biopsy it. They are waiting on results today to decide the best course of action for chemo. They believe it is stage 3 - please pray.

http://www.caringbridge.org/visit/elliot_rylan

Blessed with Wonderful Work Friends - Pray for Elliot

I feel wonderfully blessed to work with these women. They have been there for me through some rough times and I don't know what I would do without them. A few weeks ago we got to have a wonderful birthday celebration weekend to celebrate a 30th birthday and a 40th birthday. You each mean so much to me!
One of our work friends was unable to be with us that weekend and is going through a nightmare right now. Christy we Love you! Christy's little 1 yr. old Elliot has been undergoing Dr. visits and test to find out why there has been a lingering fever for several weeks. Yesterday they found out that it is a Wilm's Tumor that needs to be removed immediately. Elliot's blood pressure is to high to perform the needed surgery. Pray for his blood pressure to be where it needs to so that the surgery scheduled for Monday can be performed.

A Day with Munc

I had an awesome shopping day with my cousins, Aunt and Mom this past Saturday. We definately don't get together often but I loved spending time with them. When I was a kid I went to their house and spent a lot of my summer there. It is hard to get together now that we are grown and have kids of our own but I'm thankful we made time!
Eric was on call and I wanted my Mom to enjoy this shopping day too so, I was in need of a sitter. Evan hasn't stayed anywhere else other than my Mom's and a few afternoon visits with friends. Enter Munc. Munc is my brother, Evan's Uncle Michael. We are very close and Evan has been around him his entire life. As soon as Evan could talk he has called him Munc. Evan now knows his name but he and Munc like the nickname so it has stuck. Anyway... Munc called and offered to spend the day with Evan. Evan was sooo excited. Munc was taking him to the Louisville Science Center to the IMAX and downtown park. When Munc came to get Evan he was in his smart car. I wish I had a picture of Evan looking so big and motioning for Munc to drive away while I was trying to wave and blow kisses. He was ready for his Munc Day.
Evan had a blast and was spoiled much by his beloved Munc.

Another Month & School

Evan's cardio appointment brought no news of change and that is good! Things remained the same again for another month. It is the homograft that is narrowing due to calcification. It stinks that this can't be predicted when a homograft is chosen but it is a chance. Dr. said that the normal # is a 10 and that is what Evan was 1 month post-op in Nov. 08. From Feb. to May it went from 10 to 35. We have now stayed at 35 since April. We were told today that the magic # for another surgery is 50. There is no way to tell when we will hit 50 so we continue to have monthly cardio visit. I'm thankful for today and that for at least this month there is no cath. or open heart scheduled.

Some news we received today is that our county is looking into redistricting... Unfortunately this includes our neighborhood. Yeah... the one we moved into in Oct. so Evan could go to this great new school. Sigh. Freakin sigh. Makes me want to swear. This new change will happen for the 2010-2011 school year. Thanks... let him go to the school 1 year and then move him, great. There is a public hearing to be had and you bet your sweet britches that I will be there.

Monthly Cardio Visit

Say a prayer for Evan today... his monthly cardio visit is at 3:45.
Thanks!

Rockies Award Party

Evan's had a great time playing baseball this year! Team Rockies might have had small kids but we had a big time! Awesome kids, awesome parents and an awesome coach. We had a great time with our friends this summer and met some new friends as well. GO ROCKIES! The pictures are from their awards party this past weekend. There is one with Evan and little girl on a float... Evan and her just floated around and talked. She lost her round float and Evan paddled her over to get it. When we left Evan said with a big smile, "Eden is cute." Does anyone else have a 5 year old who already talks about girls???

Non Cooking Sweet Tea Summer

It's been crazy here lately. I feel like I'm running around like a mad woman. Work has been crazy and that is all I'm able to say about that. Crazy. I'm thankful I have a job and for the insurance it provides for my family. There are so many around me who no longer are able to say that and, that is scary.
Evan just finished up his 5 days a week for 3 weeks swimming lessons. He loved it and the young lady who was the instructor was so great with them. Evan loves her and we hope to get him signed up for her swim team. I'm glad he enjoys swimming so much and really came a long way from the first lesson to the last. We haven't had a meal at home in forever. I'm ashamed to admit that. It is so hard when you work all day, leave work and get Evan and go straight to swimming lessons. After swimming lessons my girlfriend and I look at each other with sweat dripping from our foreheads and say, "what's for dinner?" I have become addicted to McAlisters sweet tea. If you come visit me that is what we will have for dinner!!!
Talking about addictions... our friends invited us to their family 4th of July get together. Her father in law's favorite holiday is the 4th of July and he does it big! He had some amazing fireworks. Evan wasn't really interested. Want to know why? The reason is that grandpa bought a case of those popper things and gave Evan no less than 20 boxes. All Evan did was walked around popping those things on the ground. We would say, "Ohhh... Evan, did you see that?" He would reply with, "huh??? where are my other boxes of poppers?"
My Mom turned 66 on Sunday and we had everyone over to grill out. We couldn't believe that Mamaw beat us all and was the champion cornhole player!
We had some time together as a family on Fri. night and Evan wanted to go see the new Ice Age movie and also the zoo. We have passes to the zoo and I had planned on taking Monday off and taking him then so I talked him into only seeing the movie. When the movie ended he looked up at us with his long eyelashes and said, "It would be really nice to go to the zoo too and walk around for a bit." The zoo is open Fri. night from 7-8 for zoo members only so we ran up to the gates at exactly 7 and got to stroll around for an hour together. It was nice to be there just the 3 of us and no crowd. We really enjoyed that hour together. The picture is of my guys that night.
P.S.
Could you all please say a prayer for my cousin. Her son is just a year younger than myself and has been battling recurring renal cell carcinoma. He went home yesterday to spend what he has been told the last few weeks of his life with his family. A mothers worse nightmare coming true and my heart aches for them.
www.caringbridge.org/visit/ericmullinix/journal

Appointment Update

The cardio appt. was neither good or bad but rather status quo. Nothing has changed since our appt. last month. His weight is the same, his height, his echo, the pressures, etc. are all the same. Cardio said he was encouraged by this. We are to continue once a month appt.'s until there is change. When pressures do change we will be headed to the cath lab and possibly another surgery. So we will have to adjust to this new normal for us. We love our cardio although we wish we weren't seeing him monthly. It is scary for me to know we will be waiting month to month to see if things change. The unknown is what always puts me on edge but, I have to get better at this. He said to go ahead and make our plans for Disney in Oct. but that to explain to them that there is a possiblity that we will be cancelling because of open heart surgery. That's hard to hear but have to remember that we are lucky that it is only a possiblity. He said Evan's heart looks awesome and show's no signs of the high pressures from this narrowed artery.
Something funny... our cardio (and his staff) always get a kick out of Evan and his long winded stories. He asked him if he was getting excited about starting Kindergarten. Evan replied, "yes and I plan on getting into lots of trouble." They all laughed. Sigh.

Survivor night at the Bats

Last night the American Heart Association had survivor night at the Bats baseball game. Evan and his buddies were invited to attend and one of our little guys got to throw the 1st pitch and another got to run the bases with the mascot. It was fun and didn't rain too much.
I love the picture they got of Evan laughing!
Please say a prayer for the appointment we have this Thur. with Evan's cardio.

Kosair Night at the Bats game

Thought this picture too cute not to share! This is Evan and his 2 heart buddies at the Bat's game this past Sat. night. It was Kosair Childrens Hospital night and the boys were invited as guests. I as a Mommy am so thankful for these two boys and the bond Evan shares with them. I think it is awesome that they have each other. The Mommy's of these boys are not only 2 of my best friends but a support system that I depend on and appreciate. We Love you guys!

Fun weekend w/ friends

We have been busy, keeping everyday special ; )
We had a Mommy's night with my girlfriends and our boys at the Bats baseball game. I'm not sure how much they were into the game but, they loved the cotton candy. We had a cookout at a friends yesterday - check out the crazy fun slide pool he has! We had a great time - as we always do with our friends. The boys were so funny. They kept doing tricks on the slides and would ask each other, "was that cool?" Evan's team made the tournament for baseball so we have a couple more weeks of that to go. He starts swimming lessons tonight so we will be busy with that the next 5 weeks. Evan got invited to VBS with a friend at their school this week. He was a little anxious to go since he had never been before. I keep waiting for a call saying he is upset but, so far so good. Next week is our VBS. He is going to be worn out! Next Thur. is our follow up with the cardio so we are anxiously awaiting that. Say a prayer! Thanks for checking in and hope all of you are well and enjoying the summer!

Pitiful

Wow... I sounded pretty pitiful last week, didn't I? I know things could be worse and I know that God is in control. My sad mood is more that of a Mommy who hurts for what he has been through and has yet to go through. Also I'm sad that Evan completely understands and asks questions and cries. When Evan was little and we received news like this we could go in another room and cry and pick ourselves up and put on a smile for him. Now he understands and is crying and you can't leave him to grieve over the news yourself because he needs to let it out too. As Sophia's parents reminded me - this is his heart condition. Although I grieve at what he has to endure I have to help him learn how to emotionally deal with the issues that go along with his CHD.
I did call the cardio on Fri. to clarify some of the information. He said that Evan's pressures had doubled in 3 months. That he believes this is due to a huge growth spurt since his surgery. He said that they hope this doesn't happen right after a homograft but there is no way to prevent it. He has gained 10 lbs. and 2 inches in height since his surgery. His said the narrowing isn't in the homograft but lower at where it connected. He said he is unsure if it can be stented or not but the only way to tell is to cath him. He said that a month would tell us if it was a growth spurt and is going to level off or if there is another issue and the pressure will continue to get higher. I asked what would happen if they couldn't stent it and he said another surgery. I like to know as much as possible and am so thankful for a Dr. that is willing to be available to answer this Mommy's questions.

Evan has seemed to be over being upset about the news and asked us to "make things special." I believe he means to move on and we agree that we need to. What we learned last Thur. doesn't change the fact that Evan is doing wonderful and we should stop wasting time crying and worrying. We cried and talked whenever he wanted to although after Fri. he seemed much less upset. We had a wonderful long weekend and made the simple things "special."

Upsetting Cardio Visit

Yesterday was a hard day. Evan had a cardio visit that honestly sent me in disbelief shock. Things have gone so well since his surgery that I never dreamed we would get anything but outstanding results from this visit. I even was brave and let hubby continue working rather than going with me. I'm not sure I can ever do that again. After the echo Dr. M didn't say his usual, "Good job buddy, you look great." I asked if everything was okay and he said he needed to look at some numbers. My eyes instantly filled with tears that I choked back. Dr. M said the pressure in his left pulmonary artery has doubled since our last visit 3 months ago. From 30-15 to 50-30. He asked me to not go there, to not worry. That we would come back in a month and look at everything then and discuss our options. I asked why. He said maybe Evan's big growth spurt has caused it to narrow again, he didn't know for sure. Said to wait until next month. I asked what if next month it looks worse or still bad. He said we will go to the cath. lab and try to stent it. I left with my mouth open and tears. Evan knew exactly what he was talking about and just told him, "but, I want to go to Disney World!" Dr. M asked when that was and I told him we were trying to get it together for October. He said that things would be figured out by then. Oh... I DO NOT want to discuss options... I DO NOT want to wait a month. I'm upset and am sure I will get over the news and move on this roller coaster ride with a smile on my face and nothing but LOVE for my little Braveheart but today, today I feel very down with this news.
Pray for Evan.

Preschool Graduation

Evan's Preschool graduation was this past Thur. night. It was the cutest, sweetest thing. I surprised myself and didn't boohoo but, there were tears glistening in my eyes the whole time. We love Evan's little school and the people there. They are an amazing group and I feel very blessed that Evan has been able to spend the past 2 years there. I can't believe that this time is over. I can't believe my baby is going into Kindergarten next year. I hope my friend doesn't mind but, one of Evan's bff at school is also a heart friend. This little boy's Mom and I are very close. We were talking about the graduation and how bittersweet it is. She responded with, "I remember a day in the NICU and he was 5 days old and going into surgery and I wondered if he would ever feel the wind on his cheeks, ever feel the sunshine, ever have friends, ever go to school." It's so true... we are so happy they are experiencing these milestones and can't believe have fast the time has flown. Our amazing kiddos...
So it is goodbye Preschool and hello grade school. Enjoy the pictures below.

Preschool Graduation

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.