Wednesday, December 14, 2011

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.

Monday, December 12, 2011

Thursday, December 01, 2011

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!"

Sunday, November 06, 2011

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.

Wednesday, August 17, 2011

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."

Monday, August 01, 2011

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!

Thursday, June 23, 2011

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!


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.

Thursday, May 05, 2011

Awana's end... Baseball begins!

This weekend is Mother's Day weekend! How is that so? It was just Easter and here in Louisville this is Derby week! Just doesn't feel right. But whether it feel's right or not it is and I feel so incredibly lucky to have my Mom and be a Mom to my little guy. I've called him that for so long that it has just stuck when talking about him to others so I guess even when he is 6'2" I'll still call him my little guy, maybe. He is such a strong, big guy really. At age 7 he weighs 87 lbs. and I think he is 54 inches tall now. He has always been in the 90% of his age group and has stayed there and never strayed. However, he is my little guy that still thinks he is 3 and daily crawls into my lap to get hugs and kisses and man does that make this Mommy happy. I'm so glad he still loves to get hugs and kisses from me and still wants to be my "baby". He is a mess though - keeps us laughing all the time. He has had a few (quite a few to be honest) yellow days at school. He calls me everyday when my Mom picks him up and tells me about his day. The first thing he says is always "I got green Mom" or "I got yellow, and Mom I don't get it..." he goes into this long story about what happened and keeps saying "I don't get it, do you Mom?" My guess is trying to butter me up so he gets in less trouble at home and sometimes I wonder if he really feels innocent. It is always for talking. The kid talks in his sleep. And he says the funniest things. I said last time that after Christmas we joined Evan up for Awana's and he has been going and loving it ever since. On the first night when picking him up, he turned to the class and said, "peace out, don't do drugs!" My face turned red and I got him by the arm and walked very quickly to the hall where I stopped and asked him "Why in the WORLD would you say that?" His response was, "well... they shouldn't." It was drug awareness week at school but I wondered what they thought of the new family... Awards night for Awana's was last night and Evan and his little friend got their awards and Evan is truly sad that it has ended for summer break. But, just when one thing ends another gets going in full swing. We have been at it for a month I guess now but, Evan's 3rd game of the season is tonight - GO CUBS! Evan loves batting and is so strong that when he makes contact that ball goes. He gets bored in the outfield and loves when he gets assigned a base. At this point they want all the kids to have a chance at different positions so they rotate them. When Evan's in the outfield he mostly plays, balls come his way and he has no clue. He was put on 3rd base last game and he was for real! A kid a couple weeks ago had asked to go to the bathroom and the coach said you should go before the game... he told the kid to go but since he left someone else got to take that kids spot on 2nd base. Well... Evan got 3rd base and needed to pee and he wasn't going to loose his spot. We went to dinner after the game and when we got home it was late and bedtime. I asked Evan to get undressed and was going to put his uniform in the wash. When getting to his underpants, the protective cup had liquid in it and his underwear was soaked. You couldn't tell this from the outside... I guess those new dry wick pants really work... I asked Evan why in the world would you do that and his response, "I'm not loosing 3rd base!" Unfortunately I think Evan has decided this is funny because at the last game Evan was in the dug out and announced... I just peed and was very proud that no one could tell. Sigh... there is an agreement made if that happens again that he will sit out an inning but if he is sent to the outfield I'm not sure he will care. Sigh. So... that's what we are up to. School has 3 more weeks and then it's out for summer! Can't believe my little guy is almost out of 1st grade. We watched home videos a week ago with my parents and I kept saying "awwhh.... look at you Evan, I remember that..." Evan said, "Mom, are you sad?? You like me now, right?" I had to assure him that I LOVE his little 7 year old self with lots of hugs and kisses. One last thing the house sold across the street from us and they have a little boy just a little less than 2 years older than Evan. He is a really good kid and he and Evan just have a blast playing together - when Grant is at his Mom's for the weekend he and Evan play from lunch until 8:30 - riding bikes, playing in the creek, just all kinds of fun boy things. What an answer to prayer... we have prayed since we moved in that there would be a little boy or girl Evan's age to play with - he has always wanted a neighbor friend. They had friends over last week so there was 4 of them riding bikes and throwing rocks, what fun! Last thing... the weather here has been horrible... raining for days and days, flooding that we haven't seen since 2007 and tornado watches and warnings all the time. Evan is terrified of tornados - that might have to be another post. Happy Spring everyone!

Evan & Lucas Awana awards night

Evan playing 3rd base

Our creek - see the ducks?

Our pretty Easter eggs from our dyeing contest

Evan & his neighbor friends : )

Tuesday, March 08, 2011

Dance Marathon & my "crazy" kid

Team Brave Hearts just finished their 1st fundraising drive since we joined with Kosair Children's Hospital Foundation. The final totals haven't been tallied yet but, I feel really good about the work we are doing here locally. The University of Louisville held their yearly fundraiser for the hospital - the Dance Marathon. They did a wonderful job raising money and we were glad to be invited to be a part of it. Our oldest Brave Heart is a freshman at UofL so, it was neat to see her with her school friends, heart friends and family - raising awareness. We are so proud of her. Go Team Brave Hearts!
We are gearing up for baseball season. We have been playing catch and going to the batting cage. Evan is really good at batting - such a strong stout thing. He is excited about the upcoming season. We rewarded him and a friend to pick something else to do after the last batting cage practice and Evan picked go carts. We have done this before - with me or Eric driving. I couldn't believe it when we walked up and they asked if he wanted to drive - WHAT?!? Age 7 and 48 inches can drive the slower go carts. Oh my goodness, are you serious? Anyhoo... I talked him into letting me drive the 2 mile track and then he could decide if he wanted to drive. The whole way around he kept saying - how do we get back??? I would tell him you just keep following the road. I was sure he wouldn't want to do it himself. When we pulled into our spot he jumped out and said... okay which one do I drive? He buckled in and off he went. I watched him, holding my breath and then about a mile into it I saw him stop. I got the guy and said - he stopped... he is going to be freaking out and screaming... hurry and go get him. The guy jumped on a golf cart and headed Evan's way. I kept thinking, I should have told him not to get out, I can just see him getting out and running across the lanes to get back. The guy came back and said - he's fine and laughing - he ran off and got stuck in the mud. Sigh. When Evan got back he was like, that was fun!
We have started Awana's a few months back and is loving it. He had a friend going there already so he wasn't very nervous about us leaving him there. It's funny... now everyone call's him "Lucas' crazy friend." Again... sigh.
Today is picture day at school. Last Friday night while I was at a 31 party, Eric and Evan were in the garage working on a pinewood derby car - or I guess Eric was - Evan was skateboarding. Evan has this little plastic basketball goal that is still in the garage even though he is way too big for it. He skatboarded right under it and the rim of the basketball goal caught him and scratched up his eyelid pretty bad. A few nights ago I was getting him out of the tub and talking about school pictures and how handsome he was and I looked down and started laughing. I told him I guess we won't forget your skateboarding accident since your pictures will have your scratched eyelid in them! Since then he has been talking about the faces he is going to make in his pictures today, can't wait to get these back, lol. He went from winking that eye to opening his eyes real big like he was scared... He is such a mess!

With our oldest Brave Heart

Writing notes to kids in the hospital

The "boys" in front of the Kosair balloon

Way to go ULDM!