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