Merry Christmas & a whole lot more

Our big guy... he is doing amazingly good. He is the smartest, cutest and silliest kid I know. He remains at the top of his class in all subjects. He loves to read. He is probably already better at Math than I am. He is blessed with another wonderful teacher this year. We have always been so blessed with good teachers. We just had his 6 month cardio check up where Dr. McOmber said, "no change see you in 6 months." I can't tell you the relief that washes over all of us when good news is given there. Evan told him the only reason he likes to come is to see him and his nurses. Dr. McOmber said, "Evan... that's why I do what I do." I got a great picture of him and his nurses. I always forget that but not this time. The night before the appointment we made cookies for his Dr. and watched White Christmas. When going to bed and saying prayers Evan asked, "am I going to have another surgery Mom?" I promised to never lie to him so I always respond with, "I don't know Evan but I don't think so... Dr. McOmber would never let you go 6 months if thought it was possible something needed to be done anytime soon." I also reminded him that his favorite nurse had called that very day and said to tell Evan they were fighting over who got to take him back. He knew his Cheryl would win - she has seniority of course. He smiled when I told him she had called... You can tell from the pictures that these nurses (a few amazing ones missing) and this Dr. are like family to us. We just love them. Anyway... Evan at bedtime the night before said, "Mom, help me think good thoughts, I can't sleep." I got my phone and told him how White Christmas is my most favorite Christmas movie and that "Count your Blessings" was a song we could learn and so I found it on my phone and we listened a few times, learning the words and sang it together. If you're worried and you can't sleep Just count your blessings instead of sheep And you'll fall asleep counting your blessings He fell asleep and I cried. My precious sweet boy that has lost his innocence having to think of things that most adults do not. But how amazing he is and I know God has such amazing things in store for him. He still claims he wants to be a cardiologist when he grows up and I told him he could do anything he wants... and I know he will. I'll be proud though no matter what he chooses... if he is happy I will be happy. Us parents we are doing just fine... working away. MS has slowed me down a bit since Thanksgiving - lost vision for what 10 days but thanks to steroids I gained it back 100%. Of course the steroids bottomed out my immune system so despite getting the flu shot I got the flu and then a secondary bronchular infection. But I'm good. You know what I'm really good... Evan's appointment went wonderful, My Mom completely recovered from her open heart surgery (did I blog about that?) and her stroke/seizures that followed that, I can say, we are well. I couldn't ask for a better Christmas gift or be more blessed. I know It's been forever since I posted.... Again. Facebook is so quick and I can go there and post cute pictures of Evan and sayings and happenings on the go. This blog though... it has been such good therapy for me. The days when I couldn't say the words but could blog them. The days that I poured my heart out with pain or rejoicing. There are so many of you that I met right here that I hold dear to my heart. There are some that I felt such connection with even though I never have met them we hold a bond - we called ourselves Heart Mom's. They would leave messages for me and/or Evan - encouraging us - praying - letting us know they understood. I would pray and send love through a comment for heart babies that I felt I knew. The love strangers who became friends showed Evan through postings touched my heart and life in so many ways. I'm a better person, first of all for being blessed to be Evan's Mommy but also to be a heart Mommy and to have met so many other Heart Mom's that encouraged and blessed me along the way. Saying all that I think that it is a great time to publish this blog in a book form for a gift for Evan. I hope that someday he will read these posts and comments and know how very much we love him and how very blessed we are to be his parents. I hope when he grows up this sits on his bookshelf and when he see's it he pulls it out and smiles and feels our love.

Brave Hearts night at the ballgame

I'm so incredibly proud of our local support group, Brave Hearts. We have gone from being a few families that happened upon each other and came up with a dream of helping other families, to doing exactly that. Signing on with the Kosair Children's Hospital Foundation was a big group decision but one we don't regret taking. What an amazing year! The families we have been able to reach out to, the donations that pour in, the camp that we get to be a part of... all of it just amazing. What a year... what a group. I'm so very thankful for the friends/family of this group. Evan has such amazing heart buddies. I'm always stunned at their bond. So WAY TO GO BRAVE HEARTS, what an amazing year, $50,000! We were invited to be guests at the Bat's game at Louisville Slugger Field where we got to thank our donor's, announce our fundraising totals for the year and throw out the first pitch. Can Brave Hearts get a Woot Woot!

Evan takes 1st place at District for Young Author's

Evan came home a month or so ago with a book he had written at school. His school was participating in the Young Author's program and he was to type his book and bind it at home. I was so proud as I read his book - his own words - his book titled, "My 3rd Surgery". He came home beaming with pride when he found out his book got 1st place in his class. A few days later he came home again beaming with pride to find out at the pep rally that he won first place at his school for 2nd grade. We were invited to the District award ceremony. We were two proud parents when his name was announced along with the districts other school's 2nd grade winners to come on stage. Then after they brought all the 13 elementary school's on stage they said, "First place goes to Evan". You should have seen his proud face. You should have ignored my proud Mommy huge smile and tears. Yep... I couldn't help it, it just overwhelmed me all of a sudden - that little boy - he is mine and I'm so very proud.

Evan is 8!

A few say they can't get to pic's so I'm posting a few of my favorites from his party. Evan says that this was the best party ever. It was definately the easiest and most inexpensive one. We bought $5 pizza's, made cupcakes and hung some black plastic from the ceilings in the basement - threw a few boxes around for them to hide behind. They had a blast and played Nerf Guns for hours. So thankful for great family and friends that celebrated with us. That was one good group of boys!





Waiting to blow out his candle



I LOVE this picture because Evan's little face looks just like his baby face...

My Sensitive Guy

I think of things I want to document on Evan's blog and then think - I should wait until x and then post a big update. Then he says something else that I want to document and I remember, wasn't there something else I had meant to put but, by then I have already forgotten. That's how it's been lately when I think of posting here. So... I'm posting today in fear I'll forget what I'm thinking if I wait until there is more to say, lol.
Evan is doing great. Sometimes he pushes me to the limit and I lose my cool and then others I have tears in my eyes at how proud I am of him. At school Evan stays in the top of his class. He doesn't struggle at all with any of the subjects and doesn't need help hardly with any of his homework. He loves school and doesn't want to miss a day. I was exhausted after the holiday and mentioned to him tha he and I should skip the first day back and he looked at me like I was crazy and said... I have perfect attendance and I'm not ruining that Mom. Okay... geez. He loves his teacher. He has been blessed with good teachers and so far has loved each of them. I'm so thankful for that. His testing scores are really high - in the top 2% of his grade - he and his little school/heart buddy friend hold the top % - isn't that cool?!? His handwriting does get a little sloppy and I sometimes make him redo it. Mean Mama. He usually doesn't complain though - at homework time he climbs up to the kitchen bar and 5 minutes later he is done and off to play. He loves to read and be read to. So academically at school he is doing great. Socially he is doing pretty good. He still struggles to understand relationships. He is so sensitive. He still cries very easily if his feelings are hurt. It doesn't take much to hurt his feelings and he doesn't forget it easily either. I still encourage him to try hard to not let little things get to him and his response is always, "I try Mom, I do, but it hurts to stop the cry when I need to." So he cries. He also tells everything. If Evan says how something happened you can be pretty sure it's the truth. He doesn't hold anything in, even if it is going to get him in trouble. Because he tells everything he can be known to be quite the tattler. I'm sure this is annoying to his teacher at times, it is to me. He will be telling me a whole run down of something that happened at school and it ends with "and Mom I told!" Like I should be surprised. I'm always trying to encourage him to give people a break or to remember that sometimes people, including himself, have bad days. He is so sensitive. Have I said that? Some things have really been worrying him. This usually comes out during his shower at night. He doesn't like to be in the bathroom alone so usually he gets in the shower as I'm finishing up with my nightly routine of brushing teeth and putting on moisturizer. He will ask in a slightly trembled voice "Mom, I have a question." Currently he is very worried about his middle finger. Someone at school explained to a number of kids on the playground what it was. Evan came home and asked about it and we explained in terms we were okay with and why we don't use those gestures or language. However, Evan has always liked to pop his fingers. He also uses his fingers to count sometimes, etc. He has asked probably no less than 20 times if that is okay. While he is in the shower the conversation goes
-Mom I did it again and I wondered afterwards if I was doing a bad thing or not
-Did you mean it to be bad
-no, I was just popping my fingers
-then it wasn't bad, it's only bad if you mean for it to be bad Evan
-but after I popped them I remembered what it means so is that bad because I remembered
-no...
And so the conversation goes. I've told him God gave him 10 fingers and expects him to use them for his good. He still worries and brings it up quite often. He is really hard on himself if he thinks he possibly did something bad so we have been really trying to make sure he doesn't think HE is bad. So often he pushes his limits on smart mouthing or saying what we consider bad words that I have started to worry that maybe all this is because he doesn't get enough praise. So Eric and I have really been working on making sure we praise him for all the good things he does and remind him how proud we are of him daily and that we think he is a good boy. This does seem to have helped. I wish he weren't so hard on himself. So sensitive...
I think he is going to be an amazing man someday... I just keep thinking about how hard Middle school will be for his sensitive little self. Hopefully we can keep his confidence in himself high. Thanks for checking in and from now on when something happens I want to document I'm just going to post it instead of waiting because I'm just too scatter brained for that.





Evan & His school/heart buddy Caleb at the Globetrotters game at the Yum Center.




Us at the Harlem Globetrotters game. Our local heart support group went together. What a fun night.

Another Great Report!

I posted in on FB from the parking lot of the cardio's office but just haven't had a chance to do so here yet BUT, we got another great report from the cardio! There hadn't been any changes since the last visit in June and we don't have to go back for 6 months again. I feel so incredibly blessed and was given the best Christmas present this Mom could hope for.
A little bit about this appointment...
I have always been honest and open about Evan's heart and all that involves it. I didn't want him to worry too much about the appointment but didnt' want to wait to tell him in the car pool line that morning that he had an appointment in fear of a meltdown. I told him the night before that he would be going to see his favorite Dr. the next afternoon. At first he was quite excited and then almost just as quick he started to cry. He said things like, I don't want to have another surgery, I can't have another surgery, please tell me I won't have to ever do that again, why do I have to go, do they think I'm going to have to have another surgery, I wish I could just get a break, I wonder why God made me this way, I wish God would take this away. All the things that just broke this Mommy's heart. I sat and listened and talked to him about how everyone has something and the good that has come from it. That our little local support group would have never been formed if it wasn't for him and the other Brave Hearts that started it. That he will help children in our community with special hearts for years to come. I also reminded him of heart friends that have it much worse off. He has a special place for one of them - Annie - and he said, your right Mom, Annie hasn't had as many breaks from this as I've had. He seemed to do okay and then broke down again at bedtime. When we got to the cardio the next day he told him that he was scared. Our cardio is awesome, have I said that before? He told Evan that he would always be honest and that let's do this echo and see. He told him all was well and Evan said, not even a cath?!? He was so happy. The cardio told him if he ever got scared and wanted reassurance to call him. How sweet! So how AWESOME is that? Another six months! I'm praying more good visits like this help Evan's fear and anxiety be less and mine as well. What an amazing present though.

Merry Christmas!

Elf Magic

Our Elf Jingle is back!




Jingle wanted to shop Black Friday too!




He drew on every picture of Evan in the house.




Evan took him with us to see "The Best Christmas Pageant Ever"





Evan's friend has an Elf and he left Graham Crackers out and the elf left a letter saying "NO GRAHAM CRACKERS!" You are supposed to leave a saltine cracker and water each night. Evan left graham crackers and his elf got his own crackers and left a note saying "Didn't Farley tell you? No Graham Crackers Evan!"

Caroline Jane & Fall Break

Evan is Star of the Week this week! We are so proud of him. Isn't that poster the cutest thing. He is so cute! I love that he picked his cardio as his hero! I hope he is always so proud of his heart story and continues to share it. I'm also glad he see's himself as a Tae Kwon Do, baseball, regular little boy as well. He is my sunshine.




Since Evan started preschool when he was 3 I've always sent notes in his lunchbox. In K someone made fun of it and Evan asked me to stop although he seemed very sad about it. After a few days of no notes Evan asked if I would start sending them again. I had also always sent him a damp napkin in a baggie as he always likes to clean his hands after lunch. We came up with a way to still send notes and not be so obvious about it. So everyday I write a little note and put a sticker on his napkin baggie. He saves them in a little pocket in his luncbox and he doesn't like for me to throw them away. I sneak them out when it gets really full. Isn't that the sweetest thing? I'm starting turkey stickers this week!




Great Wolf Lodge - Fall Break 2011



Great Wolf Lodge - Fall Break 2011



This is a very small kiddie coaster at Kings Island. Evan was scared of every ride there, including this one. He did want to ride it but you should have seen his face when it ended. He wasn't easily persuaded to ride anything else the rest of the day. Thankfully they had trick or treating with the Dinosaurs and he enjoyed that.



Kings Island - Fall Break 2011




Munc & Daddy had a great time riding crazy rides and coasters at Kings Island.


I was so happy when our friends called us last Sat. morning and said "It's Time!" Eric was already up getting ready to leave to beat the old ladies at the hair salon. I ran into the bathroom and scared him to death saying "It's time, it's time!" He went there to get their boys while I got ready and waited for Evan to wake up. We spent the next 24 hours waiting for their sweet sister to make her arrival. This was a break from the hospital at the park. The oldest told Evan he was the God brother. Evan had a hard time that evening. He is always fine with his buddy to come over but the little guy without his Mommy and needing Evan's Mommy to help him with things didn't go over too good. I had the talk "Evan you have got to quit acting like this and quit being selfish" probably 20 times. He remembers it much differently - the night both boys stayed and they all shared and went to bed on time. Rolling my eyes.





Introducing Caroline Jane (Jane is my middle name!) our dearest friends - the kind you consider family - who are with you for a nice night out or with kids running around like crazy while we paint walls in a nursery have another blessing added to their family. I'm loving spending baby time with this precious little sweetie.

Team Brave Hearts 2011

Evan's 3rd Annual Halloween Party

Happy 1 year mendaversary Evan!

One year ago today we struggled with not getting an IV for versed and Evan wanting to walk into the operating room which resulted in me suiting up and carrying him in the OR.



I remember telling him it was going to be okay and that I Loved him and sitting him down on the operating table and holding his hand. I remember the nurses putting the mask on and talking to him and then him falling asleep. Someone - I can't remember who now - said "alright, get Mom out, everything will be fine, let's go." I remember walking back down all the halls I had carried him through slowly coming out of the suit and mask I had to dress in and walking out into the private waiting room where everyone stood and looked at me and dissolving into tears. We spent the rest of the time looking at pictures (a friend had made an album for us), praying, talking, getting updates, blogging, FB'ing, etc. until we got the news that it was over. Our little guy amazed us the next few days with his determination to go home, which he did 3 days later.




Today I continue to be amazed and blessed to be this little guy's Mommy. This morning a year later... I woke him up and asked what today is... he said "it's early release day from school" and I said "yes, what else" he said, "I'm getting my hair cut" and I said, "yes, what else" and he said, "I start Awana's tonight" and I said, "yes, what else" and he was out of answers... I told him that it had been one year ago today since his last surgery and this huge smile came across his face. I told him how much we love him and how proud we are of him - I went on to say "Your our Brave boy Evan" and he said "yep, I am."

A Good Report - whoot whoot!!!

Last week as Evan's 6 month cardio visit approached us I became more and more anxious. It was NOT a good time for me to run out of anxiety meds. Also not a good time to run out of refills and have to wait even longer. They came in the evening after Evan's appointment, nice huh? I went between feeling like things were going to be just fine to remembering feeling that way before just to find out things were not just fine. I kept thinking that this would either hopefully really help Evan to feel relief that he wasn't going to need any work for a while or that this was going to push his fear over the edge. He struggles with fear and although he gets better I felt news of a cath or worse surgery would send his fear soaring. The night before the appointment he kept saying, "Mom - what's he going to say - you think I'm okay? I think I am... I feel good..." I kept reassuring him that they wouldn't have let him gone this long without an appointment unless they were very confident that he was doing well and that they have to see him every once and a while - mostly just because they missed him : ). The day of the appointment he spent the morning with my Mom and called me and said, "I'm not going to need surgery again, am I? I wish I could just go and visit my Dr. and not get checked." I told him that getting checked is what is going to ensure that he stays well. I also told him that I'm sure the nurses had been fighting all day over who would get to do his EKG and take him back. He laughed at that. When we arrived at the appointment his favorite nurses met us at the desk and said - "we have been fighting all morning over who gets to take you back and she won because she has senority!" That got Evan going and talking and flirting with his favorite group of nurses. They are awesome I tell you, just awesome. They spent the next few minutes just going sharing stories and catching up - Evan loves to talk to them. Our beloved cardio came in and we went off for the echo - Evan kept asking him "does it look good, how does it look?" When he told him "better than ever" Evan jumped down from the table and I asked him if he wanted to do a happy dance - he declined but let out a "YIPPEE!" Cardio said there were no changes since Christmas and that we could go another 6 months. This is a record for us - a whole year has almost passed with not even a cath. Just wonderful. Just absolutely wonderful. So... I spent the rest of the evening weeping... isn't that crazy - I would be talking - calling our friends and family as they were also holding their breath and praying and waiting and I would start crying again. This went on and I woke up the next morning and started again when I got to work sharing the good news. I kept saying - "I'm sorry... I'm just so relieved." So we have a week and a half left of summer to enjoy and we are planning to squeeze in a few more fun outings. Can't believe my "little" guy (now when I say this I can hear people at the ballfield saying GO BIG E!) will be starting 2nd Grade next Wednesday!!! Oh... and his 2 front teeth that have been holding on for dear life despite the adult teeth being fully in behind them finally fell out - WOOHOO!



We are gearing up for our 6th annual Golf Scramble to benefit Kosair Children's Hospital Foundation. So proud of these amazing kids and so blessed to have their families in our lives.




Evan and Olivia (his little girlfriend : )




Evan & My Mom on her 68th birthday - she is doing much better now.




Evan and his Daddy on a guy night golfing




At the pottery place making a plate to celebrate a good appointment and loosing his 2 front teeth





This smile... this kid... I LOVE HIM!

Way to go CUBS and other news...

We have been just enjoying life lately. Mostly going to baseball games and sitting outside on the deck enjoying dinner and watching kids play and run in and out. So much different than last summer of waiting on phone calls with cath appointments, surgery appointments and results. I have had to talk myself down from a few anxiety attacks of not seeing the cardio for six months but, I've made it through them and we see him this month! Now I'm panicking again... breathe.
Did I say on the last post that I prayed for neighbor friends, whew... there are always kids running here and there now - Evan leaving doors open and me standing on the porch holloring his name. We have boundaries and it feels SO WEIRD letting him out of my sight. Eric tells me to quit being a helicopter and quit hovering, lol. I usually sit outside and read, water flowers, etc. if he is out playing - a safe distance away to allow him to just be.
This baseball season was SO MUCH FUN. After the first few games the kids just kept getting better and better, making runs and good plays. Evan has become a great hitter! He gained a nickname from the coaches and fans this year - BIG E! When his coach first yelled it, "Get us a hit Big E!" I worried that it would bother him but then I saw this huge smile on his face. He only struck out a few times this season - almost always getting a hit - lots of doubles and rbi's (are you impressed, I learned some baseball?) They would yell "Get us a hit Big E - bring our guys home" and Evan would smile this huge smile and hit and when he would stop at a base he would still be smiling. After the game he would say "Did you hear them Mom... next time I bat make sure you holler GO BIG E!" So for baseball he isn't my little guy but, Big E! He had an awesome coach this year. He was so good with the kids and Evan learned so much. Our team even made it all the way to the final game in the championship and ended the season some in 2nd place. GO CUBS! I can't wait for next season!
Things with my Mom have been hard this summer. She started with knee surgery right before school was out. That went good. As soon as she seemed to be on the road to recovery and out and about again she came down with pnuemonia - 2 weeks ago tomorrow. This put her in bed for 4 days or better. She was really sick. She went in for her checkup from pnuemonia last Wed. and they noticed her heart racing. After an EKG it showed that her heart was beating 175 bpm and she was in Afib. I was shocked when she called and told me this. They set her up with a cardio and they confirmed Afib and put her on coumadin and a betablocker. It is believed to be caused by the pnuemonia as her heart checked out fine for the knee surgery. On Monday they checked her and her heart was 75 bpm and she was not in Afib. They said this can come and go but at least for then it was gone although, it is uncertain if it was the meds or it just being gone. She is at the Dr. today for a stress test, echo and EKG. This is to make sure there is nothing else going on with her heart. We aren't sure what this holds... there are a few possibilities - our hopes is that this will go away and never come back - she might end up needing to be on this medicine long term or there is a possibility they will have to shock her heart. My Mom is my best friend and this has reminded me how lucky I am to have such a wonderful relationship with her. Evan has been missing his Mamaw (and her him) but has been busy with Vacation Bible School and spending extra time with Mommy to let Mamaw rest. So thankful for friends offering to keep him on days I'm not off. I'm a lucky girl.
I mentioned storms in my last post - it has been crazy here! We have had so many tornado warnings and thunderstorm warnings. We had a horrible storm just last night - tornado that came through and dropped here and there all over Louisville. Evan is a mess during storms. He has always had trouble with fear - fear of being alone - fear of storms. His fear of storms makes him a mess. He cries and wants to run to the basement - sometimes I feel like if I shake him he would snap out of it but, I just keep trying to tell him that he has to listen to me and that everything is okay. I can be telling him let's get to our safe place and he is running circles and crying. No one would probably believe me about this but, we had friends over during one of the storms and they were like WOW... he is terrified. Poor guy... we are working on fear.
Hope all of you are well and enjoying summer as much as we are!




GO BIG E!!!




Evan and Jake - Evan brought him home tying the game!




CUBS 2nd place awards night




My beautiful Mom




Eric & I celebrating our 11th Anniversary




A rare girls day - maybe we should do this more often - that was FUN!!!




Evan & Lucas getting down to some funky music at the pools dive in. They floated around watching Gnomeo and Juliet... so cute.