Our Little Braveheart

My Sensitive Guy

2012-01-18T14:34:00.007-05:00

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!

2011-12-14T16:48:00.002-05:00

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!

2011-12-12T10:16:00.001-05:00

Elf Magic

2011-12-01T15:24:00.002-05:00

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

2011-11-06T16:24:00.003-05:00

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

2011-10-31T13:24:00.001-04:00

Evan's 3rd Annual Halloween Party

2011-10-31T10:25:00.000-04:00

Happy 1 year mendaversary Evan!

2011-08-17T13:09:00.006-04:00

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!!!

2011-08-01T10:52:00.004-04:00

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...

2011-06-23T12:37:00.005-04:00

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.

Awana's end... Baseball begins!

2011-05-05T13:32:00.005-04:00

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 : )

Dance Marathon & my "crazy" kid

2011-03-08T12:36:00.004-05:00

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!

Evan's 7th Birthday Skating Party!

2011-02-20T22:01:00.001-05:00

Time flies...

2011-01-27T16:30:00.003-05:00

Has it really been this long??? Christmas is over and Evan's elf Jingle has gone home. I really should make a slide show on here of all Jingle's antics. It was so much fun to have him around this year. I failed to mention in the update on Mommy post that I've been sick... a lot. Strep throat seems to be my sickness of choice and I had it 5 times in the last year. I'm praying for a healthier 2011. Evan is doing great though! At his cardio appointment the week of Christmas his cardio said his heart looks wonderful... the pressure was for the first time ever in the moderate range (on a level of 1-50 he was at 14). I left that appointment with thankful tears. We get to go 3 months... oh my goodness... I don't know if I can do it. We have never gone so long without seeing the cardio! Evan has got a passion for skating these days. We went a few times before his surgery and when we were cleared for such activities have started going again. He got skates from Mamaw and Papaw for Christmas and we have been getting a lot of use out of them in our basement and at the skating rink. We have planned Evan's 7th birthday party there. CAN YOU BELIEVE IT? My baby is turning 7?!? I can't. He lost his first tooth on New Year's Eve. He was eating a breadstick at our friends house and ran to me with it in his hand saying "MY TOOTH, MY TOOTH!!!" I got it and grabbed a napkin and put it on the napking while grabbing another napkin for him to put on his bleeding gums and everyone said "OH NO!". They said I had knocked the tooth off the napkin when trying to retreive another napkin and Evan's little friend claimed he saw the dog run over and get it. The dog did run over during all the commotion. We looked and looked for that tooth. I felt so horrible... what Mom looses her baby's first lost tooth??? I do I guess. Anyway... after looking forever we decided Evan's little friend was right, their dog had eaten the tooth. The tooth fairy brings extra $$ for teeth that your parents lose, did you know that? Other news is that we are tired of the freakin snow!!! It's fun - we have a great sledding hill and have had many sled rides and friends over but, I'm done. January is not even over yet, sigh. So that's what is up with us. Oh and I'm trying to cook more and it's not going well.

Another fun day of sledding!

NYE 2010 AKA - the night Mommy lost Evan's tooth

Merry Christmas!

2010-12-22T09:30:00.003-05:00

We wish you and your family a very Merry Christmas.

We have been blessed beyond measure in 2010.
Love,
Eric, Sarah & Evan

Update on Mommy...

2010-12-13T16:31:00.004-05:00

I just finished my 6 month/year end appointments. I can't believe it has been 1 year since my MS diagnosis. My MRI scans showed that there was no change - 12 lesions remained the same so... it appears my shots are doing their job. For that, I'm thankful as with all the stress this year I was afraid it would be worse. I take a weekly intermuscular injection called Avonex that I administer myself on Friday nights. I drink lots of water that day and set the shot out around dinner to get to room temperature and take Tylenol PM and go to bed once I give myself the shot. The next morning I feel very achy which is the flu like symptoms from the shot. If I'm able to rest and take Ibuprofin Sat. morning, by 10 I'm ready to go. Mostly my legs and feet hurt and at times go numb. My eyesight also does funny things here and there. Anytime I'm extra stressed something happens. During Evan's last hospital stay during the first day I started experiencing this horrible pain in my hip and it lasted for about a month. Hospital stays have been when I've noticed the big things - numbness, vertigo, etc. So... as far as a 1 yr. post diagnosis update goes, my MS has NOT gotten worse. The shots are not fun but, also not horrible (the needle is 1 1/4" and 23 gauge (YIKES). The "it's not cancer, just MS" phase has worn off and now "it's just MS". Other appointments were for a 6 month follow up with a lung Dr. concerning the cancer scare. The CT Scan proved that it wasn't anything to worry about which is good because worrying makes MS worse, sigh. The urologist showed that the 10 stones I've had for 3 years are all still staying cozy in my kidney but growing so it was decided that lithotripsy would be done to break them up. Last Wednesday I went in outpatient surgery for the first of 2 surgeries that will be needed to get rid of these things, as they only do 1 kidney at a time. The surgery was more than I thought it would be. They did my right kidney and zapped 5 stones. When I woke up it felt like I had strep throat and someone had kicked me in the back. They said they had a hard time with the tube and it looked like someone had cut my throat up. It worked though... I've been passing little stone fragments every since. I go in for my follow-up tomorrow and to schedule the 2nd surgery for the left kidney. Might as well get it all done this year! So, that's how Mama has been doing as far medically goes. Life is Good! Well... Life is Hard but, God is Good! And I mean that! I can't tell you how many times the lyrics to the song below has come to my mind the past few months.

You turn the key
Then close the door behind you
Drop your bags on the floor
You reach for the light
But there's darkness deep inside
And you can't take it anymore

'Cause sometimes living takes the life out of you
And sometimes living is all you can do

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

You start to cry
'Cause you've been strong for so long
And that's not how you feel
You try to pray
But there's nothing left to say
So you just quietly kneel

In the silence of all that you face
God will give you His mercy and grace

Jesus never said
It was an easy road to travel
He only said that you would never be alone
So when your last thread of hope
Begins to come unraveled
Don't give up, He walks beside you
On this journey home and He knows

Life is hard, the world is cold
We're barely young and then we're old
But every falling tear is always understood
Yes, life is hard, but God is good

A little Elf Magic!!!

2010-11-30T16:31:00.003-05:00

Have any other families done this?
http://www.elf-magic.com/
A friend of ours did this last year and it was such a hit that we decided to do it this year. So... a week or so before Thanksgiving Evan wrote a letter to Santa requesting that he be allowed to adopt an elf for the holidays. You keep the Elf until Christmas Eve and are supposed to share with it what the holidays are all about to you and your family. During his stay, your Elf does mischievous things when you sprinkle magic snow on him at night. I loved the idea of making it more about memories than gifts and the letter that comes with the elf says that "the gift of Jesus is more special than any gift on Santa's sleigh." Evan was so excited when we sat out the crackers and water to attract the elf to our house Thanksgiving eve. When we woke up on Thanksgiving Day and Jingle had arrived he was ready to show him all about Thanksgiving, lol. We have had a blast with the nightly pranks - I think Eric and I are just as excited as he is!

Team Brave Hearts

2010-11-16T15:30:00.003-05:00

We have been busy! Evan dressed up in his Army man costume and we went trick or treating Halloween night at a local church. He made the cutest little Army guy, don't you think?

We then took our annual trip to Huber's orchard with my Mom (Munc got to join us) and as you can see - Evan couldn't stop to take pictures - he loves playing on all the stuff when we go there. We love eating all the good food and buying some to take home!

Our support group, Team Brave Hearts has had a big year. There are 20 families that are involved in our little group and out of those 6 of them had kids that endured surgery since summer began, us being one of them. We have one little Brave Heart - Annie who was just admitted this past Thursday and put at the top of the transplant list. I don't know what I would do without these families and their support. We have all become so close and I'm so thankful for each of them. So... it's been busy for surgery reasons but also we as a team have been feeling the need for change so this year after many meetings and group talks, we shifted our focus and signed a contract with Kosair Children's Hospital Foundation. We have just begun our partnership with them and we are excited!!! We decorated our first tree as a team for the Festival of Trees and Lights - http://www.nortonhealthcare.com/body_kosair.cfm?id=1472. We think it turned out beautiful! Can't wait to here how much it sold for.

I attached our letter below - why isn't there an attach document feature on blogger??? Anyway... I wanted my blogging friends to know what I was up to! We had our 5th annual Team Brave Hearts golf scramble this past Sunday and it was a success! We haven't put our earnings on our website yet as we have to pay the golf course, etc. but for the late date, we did well! We are planning events throughout the year and like I said, I'm just really excited!

To the friends of Team Brave Hearts,

We hope this letter finds you well. Team Brave Hearts has undergone some exciting changes we would like to share with all of our supporters. In the past we have focused all of our fundraising efforts on supporting the American Heart Association. This money went to support national research for many heart related areas including, congenital heart defects. We are glad to have had a connection with this great organization.

Our next focus is on something that we will be able to feel locally and something that will impact many of our own team members. Caring for the medical needs of children with a congenital heart defect requires a specialized team of professionals - a team that exists at Kosair Children's Hospital. The biggest need this team has right now is an ICU that is designated for heart patients. The number one concern after heart surgery is infection and a designated ICU would isolate heart patients from those who may have infectious diseases. Over the next five years our fundraising goal is to contribute $100,000 to help make a heart ICU at Kosair Children’s Hospital a reality.

We also are committed to connecting and supporting new families on this journey. We will be making care bags that will be given to each new heart family at Kosair that will include items to make the stay a little easier and information on how to contact us for support.

To make this happen, we have teamed up with Kosair Children’s Hospital Foundation. Team Brave Hearts wants to offer support in making the advances in the field of children's hearts possible. Our goal, along with Kosair Children's Hospital, is to ensure world-class medical care for children facing congenital heart defects and needing specialized heart care.

We are so excited about what we can do as a part of Kosair Children’s Hospital Foundation and we would like to ask for your continued support as we take this first step on our new journey. Please join Team Brave Hearts in funding the programs and equipment that make it possible to help children win the fight against congenital heart defects. Every child deserves the chance at life.

Please make a donation today to Team Brave Hearts and Children's Hospital Foundation by visiting:

http://www.firstgiving.com/braveheartsky

Thank you for your continued support,

Team Brave Hearts

Pics of our much needed PERFECT VACATION!!

2010-11-07T18:28:00.003-05:00

Scar Infection & Halloween Care Bags

2010-10-27T12:43:00.005-04:00

The Wednesday night after Evan's Halloween party I noticed a red knot coming up under his scar towards the bottom of it. It didn't feel warm to the touch but I was worried and glad we had a cardio appt. checkup the next day. At the appt. I told the cardio about it and he looked and said to keep an eye out and if it changed at all to call him. That he thought all would be fine but that he might need antibiotics. He mentioned bone infection but said this usually happens much sooner after surgery. His appt. other than that went great and all looks good. His cardio encouraged me to try to quit waiting for the other shoe to drop and that Evan was doing wonderful. That Sunday morning Evan woke up and at the bottom of the red knot it had turned black. This was a change but since it was Sunday and I felt like I'm too big of a worry wart I decided I would call first thing Monday. I called the cardio Monday who referred me to the surgeon. I called the surgeon and talked to his nurse and told them I had taken a picture of it that morning. She asked me to email it to her and that the surgeon was in surgery but she would fwd. it to him and he would look at it and they would call me back. I anxiously awaited his call and when he called at 1:00 and asked if I could have him there be 2:00 I knew it was serious. I got Evan from school and took him down to the hospital and the surgeon and his assistant were both waiting to see him. They both took a look at it and agreed that it wouldn't require re-admission (YIKES didn't know this was a possibility) and that it looked like a superficial skin infection. They started him on 500mg cephalexin every 8 hours. I explained that we had scheduled a vacation in FL and were supposed to leave that coming Sat. morning and did they think we should cancel. Since it was only Monday they said not to cancel it yet and to check in with them on Thur. To text them a picture of what it looked like and we could decide then. I didn't know I would be on texting terms with Evan's surgeon and nurses. It did seem to be getting a little better each day but was slow progress. I texted a picture on Thur. and they said it was improving so that the medicine should be working and that I was just going to have to go with my gut on if we went on vaca or not. They felt he was better and would be fine. I called Evan's cardio and he too felt we should go - and if it ever seemed to not be getting better to come back home. I was a nervous wreck!!! I did not want to be the party pooper and cancel vacation but Evan's health comes first. It seemed much better on Friday and thankfully the salt water must work wonders because after the 1st day of vacation his scar looked like it did pre-infection! I'm so glad we didn't cancel our trip and I'm so thankful Evan's infection is gone! I'll be posting vacation pictures soon! It was much needed and wonderful.

Evan's Scar Monday Morning

Evan's Scar Thursday Morning

When we decided to for sure have our Halloween party this year Evan said, "Hey... I know, for admission to the party people should bring bags of treats and we will put them in bags and take them to the kids in the hospital!" We thought it was a wonderful idea and were proud of him for thinking of it himself. We added that on the invites - that if you would like to bring a bag of goodies we would be making Halloween care bags to deliver to the hospital Halloween week. I put brown paper lunch bags next to each pumpkin so the kids at the party could decorate the bags that would be taken. A few of the older kids at the party volunteered to fill the bags for us during the party so all the work was done and the bags were ready to go. So... the day after coming back from vacation Evan's idea was acted upon and Halloween care bags were delivered to the kids on Evan's floor at the hospital. He did so amazing delivering those. I was so very proud of my little guy. We met with the nurse manager and I pulled a wagon full of the treat bags (they had candy, pencils, erasers, bubbles, stickers, cookies, etc. in them) while Evan walked with her and hand delivered the goodies to each room. Get this... we had 30 kids at the party so 30 bags were made and there were 30 patients that day on the floor! Anyway... Evan was so kind and thoughtful at each room. The nurse manager would knock on the door and say... hello I'm the nurse manager and this is Evan and he is a former patient of ours and he would like to give your child a Halloween treat bag. They would always say yes and Evan would say things like - "I missed my first Halloween while I was in the hospital and I got a treat bag and wanted you to get one too - or - I hope you like your goodies and I hope you feel better soon." He did so so good and when we would leave a room he would say, "Mom this feels so good!" I Love this kid with all I have. We are so blessed with this little guy.

Last thing... there were tornado warnings here yesterday and the school had to go to shelter for 2 hours. I knew Evan would probably be very upset and I was right. He called and told me he cried the whole time and that his teacher made him feel better by patting his back and telling him it would be okay. He said he was so worried that the tornado would hit them or be where me or his Daddy was. He said he kept praying that we would all be okay. Then he said when it was over he cried again because he was so happy!

Next post will be vacation pictures!

Evan's 2nd Annual Halloween Party

2010-10-15T18:48:00.001-04:00

Getting back to normal

2010-09-21T16:52:00.004-04:00

Evan's cough ended up turning into pneumonia. His pedi, cardio and I agree it was just a combination of things. For one - he just had open heart surgery and there is always junk that needs coughing up after that. For two - it is allergy season and Evan always has a time with allergies and croup, it just usually isn't until Oct. For three - the combination of the two above - he just had open heart surgery and it hurts to cough so the junk stayed put and went into pneumonia. So... it's been lots of breathing treatments, steroids, inhalers and so on. Finally the coughing has ceased and he seems to be much better. We went to a follow-up appointment yesterday and they said he sounded much better and we could stop the breathing treatments - woohoo! His cardio checkup also went well and things look great so far, that was a relief. We have a followup with the surgeon on Oct. 1st. Evan is looking forward to this appointment in hopes that the surgeon says he can get back to the things he loves - riding his bike, Tae Kwon Do, recess and gym. Thankfully his school has been awesome and has let him go to art class during recess and do some fun stuff there so he doesn't feel punished that he isn't going outside. Evan also isn't able to carry his backpack so, either I have to walk him in school or someone else has to help him. Evan kind of feels a little like a kindergartner having his Mom walk him in when it is not the first day. One of his heart friends also goes to school with him and lives close so he offered to carry Evan's backpack into school. The first day I tried to snap a picture through my car window with tears in my eyes at what a cute sight that was. A heart friend helping out a heart friend. Too cute!!! His friends grandma said it looked like Caleb had lost a bet - loser has to carry my backpack into school for a month, lol. It is the cutest sight... Caleb is about 1/2 Evan's size. They are friends for life. Despite the pneumonia and thanks to a friend for free tickets, Evan got to enjoy his first UofL football game - he LOVED it! GO CARDS! He really loved that. Other than that Evan is loving school. I'm so thankful. His teacher said he jumped right back into things and didn't skip a beat! I can't believe boyfriends and girlfriends are already something 1st graders talk about! One day when my Mom was picking Evan up from school he told her he needed a wingman to talk to the girls for him and tell him what they said!!! He gives full reports everyday on what everyone did and who said what and who was on yellow and why. I love our talks - he talks my head off though! Oh something else he has always said that I haven't written down here is, "Mom... I need some water... ice cold." He always has to end that with ice cold. The last picture is of Evan's bestfriend and his little brother. They were pretending to be puppy dogs and little Jameson always has to do everything the big boys are doing. This past weekend marked 2 years that Jameson was with his forever family... we Love you Jameson!

Will you please say a prayer for our fellow Brave Heart member (see link to the right) Sarah. She has HLHS and had surgery this morning and is having some complications.

Back to Work/School

2010-09-09T12:59:00.002-04:00

After a couple visits to the pedi and every 4 hour breathing treatments, inhalers and a course of antibiotics, Evan is feeling better. He was so disappointed when he started running a fever this past weekend, knowing it would delay going back to school. Thankfully the medicine kicked in and he was only a day later than planned. It felt so weird to be dropping him off at school. Other than short grocery visits we have been together for 5 weeks now. I stayed home his first day, just in case. He loved being back and had a really good day. He was super tired though. So today I started back to work... again it just feels so weird. I miss my little guy. I'm sure we will get in our routine again but right now I feel like I should still have him with me. It's hard to hand them over after just 3 weeks post-op. Hard. Enjoy the picture of his first day. I have one of he and his teacher but I'll have to ask permission I guess before I post that. Hope everyone is well.

School & Coughing

2010-09-02T09:40:00.003-04:00

I don't think I would be cut out of home schooling. I'm ready to turn the teaching job back over to the teacher next week! I'm glad that Evan was able to keep caught up with his class though and won't be behind. Other than doing school work Evan has been playing away. He has loved that I let him turn my living room and kitchen into his Star War world. It helped letting him drag it all out and spread it around to play a little more calmly. We have also ventured out a little this week for lunch and hair cuts. He is looking handsome and ready for school. It's going to be hard to take him and drop him off this coming Tue. We have been together non stop for 4 weeks now and I think it will be harder on me than him! We had dinner with friends and he told them that he was ready for his first sleep over and a vacation from us, lol. The only concern with Evan has been coughing. Everything else seems to be healing and going well. He started coughing earlier this week and despite phone calls to the pedi and trying things it has gotten worse. We are headed in today for a check so hopefully it is just allergies. We appreciate the continued prayers. Thanks also to everyone who has sent cards, presents and goodies. It really makes his day.

Home Sweet Home

2010-08-23T09:59:00.003-04:00

Evan told the Dr.'s at preop and all his appointments that he was going home in 3 days and 3 days postop that is exactly what we did. This time was different. Evan did amazing and was the best patient. He remembered how it was before so there wasn't any telling him this will only hurt a little. On Tue. he was ready to be extubated about 2 hours before it actually happened because his blood gases kept coming back high. He kept squeezing my hand and pointing to his mouth and mouthing OUT. It hurt to see him do that over and over and have to keep telling him that in a minute they will. He had little tears just streaming down his face and would ask again. When the guy did finally extubate him Evan immediatly said, "thank you." The guy said that made his day. After that the night was spent begging for drinks and only being allowed to suck what water he could from a sponge. He was much happier when they came in at 4 the next morning and gave him a drink. Rounds started the next morning and I believe he didn't remember the 15 or so Dr.'s and nurses that come in to his room during rounds. His little lips were just trembling. Once most of them left he told his cardio in a quiet, scared little voice, "thank you for fixing my heart." Bless his little sweet self. Then the morning started to get busy with pacer wires removed, central and arterial lines and the foley cath. He was so anxious. Once we got to a room a friend reminded us of some of the things the child life group has and they had our room ready with a calming fishy light and this light that put stars and clouds on the ceiling. This helped him calm down quite a lot. He was worn out. He enjoyed short visits but seemed annoyed when anyone was there for long. Like I said, with his age I guess there was a lot more anxiety. The next day he was anxious from morning rounds when it was announced that chest tubes would be pulled that day until they were actually out. He felt much better after that and we went on a good walk. I forgot to mention that there was NO trouble peeing this time around. Since we had such issues last time we requesed that a urologist put in the foley cath and that made the difference. Once he got up he was done with his bed and spent the rest of the time in one of our chairs playing with one of the many toys he was given. On Friday morning at rounds the Dr.'s asked what Evan wanted to do that day and Evan said, "go home" and they said, "sounds good." We were packed and out of there by lunch time. Evan had been itching all day Thur. and Fri. and right before we left we noticed some bumps on his back. We weren't sure if it was the sheets and pillow cases causing his skin to react to their detergenct or the pain meds. On Friday night he seemed very bothered by the pain meds so we tried skipping a dose and have never gone back to taking them. We ask him often if he is iny pain and he assures us he feels fine. He is taking ibuprofen and lasix. They expect to stop the lasix on Thur at our postop apointment. When we got home we had a nice surprise of welcome home banners and confetti - Evan was so happy with that and actually cried happy tears to be home. Being home has been wonderful. The biggest issue we have had is to try to make Evan slow down and not do things that could hurt himself. He is ready to go... ready to play... ready to run and jump and go to school. He is ready for things to be back to normal and isn't happy that it isn't happening fast enough. So... that is where we are at. Enjoying being home and trying to make him happy with less active activities. Thank you everyone for your prayers... Evan amazed everyone and I know God protected him and brought him through this with flying colors. Thank you to our family for being there with us during his surgery and bringing us food and being understanding when Evan was and wasn't ready for company. Thank you to our friends who brought Evan goodies and us food. Other than dry cereal and jello the only things Evan ate while we were at the hospital was soup Mamaw brought and a ham and cheese sandwich that Shannon gave us from Jimmy John's. We feel so blessed to be this amazing little guys parents. Now... I've got to get back to keeping him busy - without jumping, pulling or rough play, lol.

Post-op Day 3

2010-08-20T09:06:00.000-04:00

We are going home!!!

Post-op Day 2

2010-08-19T08:37:00.000-04:00

Evan had a good night. His oxygen sats have been better & his blood work is normal & no fever. Since the drainage in his chest tubes are down they are being removed today. I think Evan will feel much better once this happens. He did get up for a bit this morning.

Post-op Day

2010-08-18T17:53:00.002-04:00

Evan was extubated at 6:30 last night - about 2 hrs past when he wanted to be. Last night was okay. Evan was very thirsty & not allowed to have anything until early this morning bc his bp was up, blood work a little high, oxygen a little low & having a couple p wave rhythm episodes. All of these resolved once pain was better controlled. Drs were all happy this morning at rounds & told Evan he was on his path to go home Friday. He thanked them for fixing his heart - how sweet is that? After that the morning got rough and Evan was anxious and in pain from all the commotion of losing his arterial & central lines. He also got rid of his pacer wires & foley cath. Guess what - he is peeing like a champ! Once we were moved to a room Evan has been resting much better. Here is to rest on 4 west!

Surgery Day

2010-08-17T08:39:00.006-04:00

Update #4 -
Evan's surgery is complete! They used a cow jugular vein and valve. He is breathing and his heart it beating on its own in a regular rhythm. He hasn't needed any help with the pacer or anything like that. We are waiting to see him in ICU. Dr.'s were very pleased! Praise God!

Update #3 -
They just came in and said that he is off heart lung bypass. We will hear from the surgeon next once the chest tubes are in and he is closed and on his way to ICU.

Update #2 -
They just updated that Evan is on heart lung bypass and that Contegra has been chosen (bovine cow jugular vein and valve.) They said he is doing well. We are waiting to hear this has been completed and Evan is off the heart lung bypass.

Update #1 -
They had a hard time getting a central line started on Evan but were finally successful. They have started working through the scar tissue and are getting close to being through that. They will come back with another update once they are through that and he is on heart lung bypass.

Evan had a hard morning... It started yesterday when we were at preop. We were talking about him not wanting to take Versed. He said he wanted to walk into the operating room. The anesthesiologist told him he could give him an IV and give him Versed in his IV and he wouldn't have to drink it. Evan broke down and said he wasn't brave enough and he was sorry and everyone would be embarrassed but that he didn't want to walk in that he would rather take the Versed through the IV. We all had to convince him that he was the bravest boy we knew and that he was very strong and that taking Versed didn't change that - that we were very proud of him. So that was the plan. This morning we woke up and he was very nervous - had to keep going to the bathroom. When we got here they tried to get an IV but the first one failed, and then the second one failed. He began getting very nervous and upset. The only option at that point was to drink Versed or walk into the OR. He was crying. It made it a hard morning. They called his cardio, who we all love and Evan wanted him and I to walk in with him. So I suited up and carried my little (big) guy with Dr. McOmber down to the OR. He did good... was nervous but not crying. I sat him on the operating table and they put his mask on and he was asleep in no time. We are waiting now to hear that they are through the scar tissue.

Enjoying our extra days

2010-08-15T18:38:00.003-04:00

We have been enjoying the extra week with Evan that cancelling the surgery gave us. We got a special visit from our Aunt B. Got to go do the bungee jump at the mall - 1 more time and get a slushie. We went a saw a movie - just Evan and I. We went skating with some of our friends. We went to a pottery shop with some other special friends and painted a piece that I will cherish forever - that was such a fun time. Today we went to church and prayers were lifted for Evan and all over his care. We had dinners with our family and friends. Tonight we are relaxing watching movies. Preop starts in the morning and surgery at 7:30 Tue. morning. Continue to pray!

Surgery Rescheduled - God is in Control

2010-08-11T11:32:00.001-04:00

Please pray! We got a call late last night that there is an emergency with another child and they need to bump Evans surgery for them. We were given the option of being stand by 2nd case or to reschedule. Being standby would have been difficult but we said we would take it if we could not be rescheduled within the next few days. Being standby would mean that Evan would not be able to eat or drink after midnight tonight and be waiting for the call to come in tomorrow. What time Evans surgery would be, would depend on how the surgery was going for the 1st child. If it went well it could be early and if it lasted much past afternoon we could be cancelled. We prayed and they called back and said they had a cancellation and that now Tue was open. So... Evan will now have preop Mon. and be 1st case for surgery Tue. morning. Pray for Evan - he (& we) were ready. Pray for this family starting this journey & pray for the family whose surgery was scheduled for Tue
& cancelled. God is in control.

Pre-op with surgeon down

2010-08-09T08:46:00.005-04:00

Pre-op with the surgeon is down and pre-op at the hospital is Wed. and then the big day on Thursday. Evan filled his pre-op appointment by making the surgeon laugh. The surgeon explained that he will have 3 options ready to go on Thursday. One is to simply cut the kink out and sew the artery back together. This would only be an option if the kink is small and the artery is not narrowed elsewhere and/or the branches off the artery are not narrowed. The 2nd option is Contegra (sp) cow artery and valve - this is only an option if all that is narrowed is the lpa and/or valve - if the branches are also narrowed this option is out. The last option is homograft human left pulmonary artery valve and branches and this will be used if there is narrowing in the branches off the left pulmonary artery as well as the artery and valve. Of course my prayer is that whatever would last the longest and cause another surgery to either not be needed ever or for a very long time be the option that is chosen. This is the surgeon's call and I pray God will guide him to the right decision. We are spending these last few days to meet Evan's new 1st Grade teacher and have a little fun. We are meeting friends today for lunch at a pizza shop where a train brings around your drinks. Dinner this evening with family and Tue. to rest and pack. Church yesterday was emotional and the prayer with the pastor had tears streaming down my face. Thank you for your prayers, emails and messages... keep them coming!

Approaching the finish line

2010-08-05T10:12:00.002-04:00

My last day of work is today... That means this surgery is actually upon us and for that I'm thankful. The waiting has been hard but, God has seen us through that and will continue to carry us through. Everyone always says, "how did you do that" and/or "your so strong". On the other side I always wonder too... how we did it, and the only explanation is through our faith we are made strong.

Please pray for Evan... pray for us as parents... handing your "baby" over is the hardest thing I've ever done. Pray for the Dr.'s, nurses and surgery team that will be caring for him and for the overall success of the surgery. It means so much to get the notes, calls, emails, comments, visits, etc. Evan LOVES the attention and it makes him feel so special.

I'll be updating his blog so please check back with us and pray for specifics. It always seems there is something - sometimes it is pray for pee and sometimes it's for pain management.

Tomorrow is our consult with the surgeon, next Wed. is preop and next Thursday is Evan's big day. The surgery is scheduled to start at 8.

Please pass this plea for prayers on through your own blog or email to your friends, family, church prayer groups, etc. We believe in the power of prayer!

We enjoyed VBS last week and one night the theme was "God is comforting." Yes, he is and I'm so thankful.

Now we all know...

2010-07-20T14:40:00.004-04:00

Evan did good at the consult yesterday. Our cardio told him that he had the results of his cath and that his "straw" was pinched and that they couldn't fix it in the cath lab. He told him that meant they would have to do another surgery but that since he is big they hoped to put an adult size in and hopefully it would be a really really long time or never that he has to do this again. Evan was very quiet and just said okay and that he would be glad if they didn't have to do it again. He also said he didn't want to take Versed before the surgery but that he would like to walk in like he did for his cath. The cardio told him if he was sure then he would let him and Evan said he was sure. Dr. later told us that when Evan had his cath it was the first time he had ever had a kid or let a kid walk into a cath with no loopy meds before hand and that if he did it with the surgery that would be a first for the hospital. He said when Evan walked into his cath there were no issues, no tears and that he thought Evan prefered it because he had some control. So… we will see about that. When we left I told him that he had been wanting to do some things and why didn't he pick one and we ended up going to eat lunch at Culvers and seeing Despicable Me. It was cute. He had been wanting to go fishing too - he was so excited his Daddy took him this past weekend. He seems to be doing okay… later in the day yesterday he told me he was scared and asked if I was sad and I told him yes that I was sad he had to have it again but glad they could fix it. He told me he was okay. He wanted to call people and let them know so he called his grandparents, uncle and his best friend. It was sad hearing him… I'm so proud of how strong he is but so sad at all he has gone through that has made him that way. He is my brave boy.

Monday is consult day with the cardio

2010-07-16T10:54:00.002-04:00

This coming Monday, the 19th is the day we are meeting with Evan's cardio to break the news of surgery to him. I cannot say how much I appreciate our cardio - he is just an amazing guy. He is so good with Evan and I know Monday will be hard but, our cardio has a way of talking to Evan and the trust he has in him is amazing. I'm ready for Evan to know. I hate knowing and not being able to tell him - when I know he is thinking and worrying if he is off the hook for surgery or not. I think although he isn't going to like the answer the anxiety of not knowing has been hard on him too. So... Monday we will all know.
We have been staying busy. So busy that this week we have gone home everyday (other than Mon.) and rested. Evan even took a 3 hr. nap on Tue. at Mamaw's. This is the first nap he has taken in I believe 2 years so, I knew we were maybe doing too much. We had some of my Mom's family in a week ago and Evan & I got to spend 2 days with them. He Loves his cousin Malia - she is grown up and so cool he says. We spent one day at the movies and another at the zoo. Isn't the zoo picture of them with the gorilla awesome? He sat there like that with them for 5 minutes when I finally told them lets move on. He kept putting his feet and hands up to the glass to where they had their hands. He picked his nose too... yucko. They got to celebrate my Mom's birthday with us and we really enjoyed having them.
We also got to go to Great Wolf Lodge in Ohio with some friends that had an opportunity to get a great discount and invited us along. We always have a great time with this family - us wives are great friends - our husbands are great friends - our kids are best friends, just fun for everyone. We were so excited for the boys to get to have a sleep over and got the biggest room with a cabin inside that had bunk beds and another twin bed in it. We knew that our boys would never stay the night at each others house but this would be a safe way to have a sleep over. We should have saved the money and got the room with 2 King beds. They played in there and thought that was cool. But, come bedtime - the only person in there was the 2 year old and our big boys were in bed with us. Silly boys. I didn't take any pictures of their waterpark - and that is too bad because it is AWESOME! We stayed in there for 8 hours I believe swimming, doing obstacle courses, relaxing in the lazy river and sliding down slides. We went back the next morning again. The kids also got to do this wizard magic quest throughout the lodge that night and that was right up Evan's alley. We visted the Creation Museum on the way home and Evan was amazed at how the Ark was built and the petting zoo was fun and the gardens were beautiful. Again... no pictures. This weekend I get to do some school shopping for Evan with my Mom and Evan is going fishing with his Daddy and to see his dog Babe at Granny's. We also are getting some Munc time Sat. - we love when he visits. There is a birthday party thrown in too - I can't believe this little friend is 7. I was prego with Evan when I was in the waiting room to hear the good news of his arrival.

We have a date....

2010-07-08T16:24:00.003-04:00

We got a call late yesterday from surgery scheduling with a date for Evan's surgery. When the nice lady said, "I have the date for Evan's surgery" and I said "okay" and she responded with "It's August 12th with preop on the 11th." I could only think she was kidding. But, she wasn't. SCHOOL STARTS AUG. 11TH!!! Evan's cardio called me today and I said, "say it ain't so". He didn't know about the date and was sorry when I told him.... he said he thought with a month we had more than enough time to get him in before school. He said that with "his" kids, scheduling does take a little longer because he wants in on the surgery. He wants to be in on Evan's surgery and I told him we did too... that I wouldn't want it switched if he couldn't be there. He said he would have his schedule person call the other peds cardio office in town's schedule person and let them know that if they have a surgery come open that he would like it for Evan - of course it has to be a day he is available too. He also has us on backup for another surgery he has already scheduled for July but, more than likely it will be Aug. 12th. He wants to talk to Evan and wants it to be before the end of July... just in case Evan's gets bumped up. So, we have a meeting on July 19th at noon so he can talk to Evan. Evan is still asking questions here and there - some of them just breaks my heart. He has a little dog at his Granny's house and he told me the other night, "Mommy... if I die before you do will you take care of Babe?" I sat up thinking, why oh why Evan do you say these things!!! I told him that God has amazing things planned for him and that he is going to grow up and be something awesome, like a heart surgeon helping other kids and he is going to be married to a beautiful girl and have kids and that he would drop them off at my house like I do him and I'll be the Mamaw!" He liked this and went on saying happy things. He ask here and there is I know yet and so far I haven't lied because I haven't known a date and now I do... I'm trying my best to keep him busy. We have a long fun weekend planned so just another month to go (rolling eyes.) I'm so sad and frustrated and thankful Evan's case isn't urgent, all rolled up into one. I think this will be really hard on Evan at school. On the first day... it is everyones first day - you meet your teacher - meet your classmates - get assigned seats, etc. Evan will be going in 3-4 weeks later when a routine is already established. I think he will struggle socially with this - feeling different and left out. Ugh... tears rolling just thinking about it. Say a prayer... if this is Evan's date then it is for a reason.

I have had some asks why their messages aren't showing here... if you do not have a google account and you post a message click on Anonymous and then put your name at the end of your message in the message box.

Enjoy the pictures of Evan having some summer fun in his little pool. Look at his hair!!! He wanted it just like his Dad's - short!

Surgery was decided but no date yet...

2010-06-29T11:11:00.004-04:00

Heart board was held last night and Evan was presented. That is all the information I really have as of now. Evan's Dr. is working without his partner this week and so his time is thin. Surgery was decided and he said he did tell them we needed it in time to get him back to school. We should be getting a call with a date soon and if it's in time to get him back to school it should be in the next 3-4 weeks. Evan goes between seeming to forget about it, to crying and having a hard time. As of last Tue. he seemed to have forgotten and hadn't asked anymore questions. Yesterday my Mom called (she keeps him during the summer) and said he hadn't been himself all day and didn't want to do anything. She said she was doing laundry and when she walked back into the room he was upset and said it was because the Dr.'s were talking about him and that he didn't want open heart that his heart felt fine. I left work and went and got him and he asked me if I knew yet and I told him no but to not be scared... that Dr. M will only do it if he thinks he has to and that if he does that God is always with him protecting him and that he has the best Dr.'s and that they will make sure he is okay. I took him to see Toy Story 3 last night just to keep our minds busy - it was so good. When we left Evan said "I'm never getting rid of blue puppy, bear or putchers." These are stuffed animals he has had since he was born. Today she called and said that he is following her everywhere... sat outside of the bathroom while she got ready this morning but, that as long as she is with him he at least is up for doing things - riding his bike, etc. I'm leaving early again today and taking him to the zoo. Say a prayer for our little guy... for him to feel the protection and security he needs from God and us as parents. Help us to know how to answer his questions. A friend recently showed a picture to me of a hospital surgery room with Jesus standing behind the Dr.'s. She had it framed and it was in their hospital room during their last stay. What a wonderful picture.

Waiting another week

2010-06-22T15:37:00.003-04:00

Just wanted to post that we found out that Evan was not presented at heart board last night. I'm not sure of the reason yet... it usually means it was cancelled due to an emergency. So we wait another week...

Our Brave Boy and Cath #5

2010-06-17T11:38:00.002-04:00

Yesterdays cath went very easy and good. I was worried it would be cancelled all the way until we were walking to it because of his breathing issues. Thankfully, it wasn't. The anethesiologist did say that his uvula had some white patches on it but that it wouldn't cause harm to doing the cath but that if his throat was very sore post cath to call the pedi and get something for it. Evan said he did not want Versed and the cool anethsiologist said he was old enough to refuse it and Evan walked with no meds over to the lab and our cardio met us out in the hall and took Evan's hand... they walked off together - there were no tears. I was worried there would be tears once we left but the nurses and and Dr.s said that there was none. That he talked to the Dr. and the anethesiologist (who did magic tricks) and climbed up on the bed and was snoring seconds later. So glad that went so good and he had a good experience without Versed. They had a easy time gaining access to the vein in his right leg. That was such a wonderful first call compared to the call in 2008 that took forever to get access. They called within a half hour and said they had access and within another half hour they had taken measurements and pictures and close to 10:30 they were done. They showed us the pictures and explained what had happened.... There is a kink in the homograft just past the valve. Imagine the heart and then the valve connected to the heart and the artery connected to the valve. The heart sits under it all. Because of Evan's big growth spurt right after the surgery the heart grew quickly as well and pushed up causing the artery to kink just past the valve. He said he did wonder if they could stint it and called the interventionalist and they discussed the possibility... in the end though they agreed they thought it would be trading one problem for another. If they balloon or put a stent in just past the valve they will be pulling the valve open causing it to leak (which it is not doing) making the heart work harder, which makes the right ventricle grow and the heart become weak. He said this could buy us a year or so but that then we would be doing the surgery on a heart that was not in as good of shape as it would have been had they just gone ahead and done it. So... He said he was glad to see that the homograft was a success... Evan's body didn't cause it to narrow or reject it and it didn't calcify... it was a quick growth spurt that caused this not to last years. Other than the kink the donor was in great shape. Becauseo of this it leads him to believe another homograft would be the best option and hopefully without a growth spurt his expectations would be it should last until he is in his 20's with another to last for life or even possibly this being it. He said Evan's heart is in great shape. He will present it to the board on Mon. and he said of course they could have different opinions and they will let us know the action they think best. Our cardio said he believes we will have surgery and that it will happen in time to get Evan back to school on time. Evan did awesome... such an amazing kid... I'm so proud. He was an excellent patient... no whining or crying... a few tears but honest ones. He vomited in recovery and he cried a little then - not sobs, just tears. Every nurse and Dr. over his care today commented on his bravery and how good of a patient he is. Most of them came back once their part was over to check on him. He wanted to be quiet... wanted the lights low... didn't want to talk - didn't want the TV on. Didn't sleep much but was quiet and just wanted me to sit there and hold his hand. It was a long afternoon but he was good, quiet and did everything the nurses asked of him. When the last hour came along he began to be a little more happier... knowing the end was drawing near. They started removing his IV and his blood pressure cuff... by 4 he was talking and smiling and even got to ride out in a wheel chair... he thought he was big stuff. Last night he was mostly quiet but watching tv and smiling and talking some. Wanted to play nerf guns so he used the targets and practiced some. Today after lunch I can start removing the dressing and he wants this off now. It will take an hour or so in the shower I'm sure... they gave me a whole bottle of removal so hopefully I can make it painless as possible. Wish me luck with that!

Croup and Teeth Grinding

2010-06-14T10:27:00.003-04:00

Last Sunday night Evan started his croup cough. I knew by the sound of it that it was probably going to go into croup so I scheduled an appt. with the pedi on Mon. We went in and she agreed that whatever we wanted to call it - croup/reactive airway disease/asthma that it had started. She wanted him to do a breathing treatment in the office. We have done these many times in the past but not in the office in a long time. Evan struggles with reflux for many different reasons - something covering his nose and/or mouth, a smell, a texture, crying, whatever. When we do breathing treatments at home he asks for lots of breaks for a little sip of water. He can barely stand it but with the breaks we make it through. So... we are at the office and Evan starts panicking... he needs a drink - the nurse encourages him to continue and he starts to cry and starts choking - he needs a drink - the Dr. comes in and asks him to try to finish so she can see if its helping (I love his pedi) they were really trying to calm him down to no avail. He said I need a drink - none of you understand and then... the vomiting began. I don't know if I have ever seen Evan vomit that much and I've seen him do it a lot. Once it stopped we were moved to another room (thank God - Evan had boiled egg whites and cheese for lunch) and the Dr. said no more breathing treatments for Evan - we move to inhalers. He is doing much better with this and has in the past week become a pro at it. We started a steroid and 2 inhalers that day. We were told to come back Fri. for a recheck. This past Fri. we went in and although his breathing was better his allergies/sinuses seemed worse and making him still sound really junky. We were already on an allergy med and nasal spray. They checked his white blood cell count and it was high so we started an antibiotic. Evan again begged for no liquid meds so he was so happy with his new pills and inhalers! We are trying very agressively to get this all in order before Wed. which is the day for Evan's cath. We are going back today for another check to see if the antibiotic has helped him get back on track. He is still coughing but seems better to me.

Evan seems to be doing well. He talks about the cath here and there and asks how many more days. He has always been a teeth grinder in his sleep when things like this are bothering him. He has been grinding away every night since his last cardio appt. It is the strangest noise I have ever heard. So between coughing and grinding of teeth, Evan or I have not gotten much sleep. Say a prayer his white blood cell count is back to normal today.

See final picture for the American Heart Associations poster this year. I think it turned out just great!

Cath Date

2010-06-03T12:18:00.004-04:00

I just got the call... Actually I got 2 calls...

They called and said they had gotten their first available appt. in the cath lab, and it was July 1st. She could tell I was upset and asked if I was okay... I told her I just really wished it was sooner so that our hopes of Evan's surgery being earlier and him getting to go back to school with everyone else would be more likely. She said she was sorry and that hopefully they could still work that out despite the late cath date. She called back within 2 minutes and said - I got a call as soon as we hung up with a cancellation of June 16th and I can put Evan down for it and its first case in the morning. I felt so relieved! Thank you God! I know that surgery could still come late enough in the summer that he can't go back to school on time but, the earlier date gives us a better chance at that being able to happen. I also hated that Evan would have another month to think about this cath. He has been struggling with this news and the sooner it is behind him the better. He is my brave boy! He brings tears to my eyes talking about it... "So Mom... Dr. said I didn't have to take versed if I didn't want - that we would just walk in the lab together and I could put on my own mask - I'm so glad I'm not taking versed. Mom... after the pictures Dr. sends them to Dr. A at heart board and then I have surgery..." Sigh... you can't lie to him - the truth is that's right - and why does my 6 year old know that here in Louisville they have heart board to discuss patients - sigh. I just keep telling him that, that might happen but to remember how well he did last time and that he will do that well again. We have had 3 kids recently in our heart support group have surgery and they have all done really well. I think this has helped Evan know that, that is usually the case. His best heart buddy is wearing a holter monitor today and broke down leaving the appointment after having it put on. He told his Mom, "I don't want a special heart, I want God to take it away. I still want to have a heart team and do the heart walk and games but I want to do it for other people, not me." What do you say? I had a hard day yesterday and I'm emotional today and angry and humble and blessed. So many emotions and I'm an adult. When Evan's busy he seems to be doing well... but you can definately tell he is worried if their is a quiet moment or if he is going to have to leave me for a while. He will say things like, E-Hold my hand Mommy. M-okay, are you okay E- yeah it is just dark outside. After a few moments he said E-Is it June yet Mommy, M-yes, today is June 1st. E- I wish it wasn't, I'm having a cath this month." Breaks my heart.

Sharing pictures from Mother's Day. We went to a really neat farm that serves lunch and dinner - almost like a Bed & Breakfast but there aren't any nightly accomodations. We had a wonderful day and I'm so thankful that God made me Evan's Mommy and for my Mom!

Cardio appt. news and UofL game benefiting Team Brave Hearts pics

2010-05-27T10:34:00.004-04:00

We had our monthly cardio appt. yesterday and unfortunately the pressure in Evan's left pulmonary artery has gone over the mark - requiring intervention. We should be getting a call today with a heart cath. date. Following the heart cath. Evan will be presented to the heart board the following Monday and we should have a date for surgery the next day. Our hopes are this can be done in time that Evan is given enough of a recovery period to return to school with all the other kiddos in August. Evan of course understands all of this and had a good talk with is beloved cardio. His main concern was that he didn't want versed before the cath. Our cardio agreed that Evan would do fine without it so he and his Dr. made a plan to walk together into the cath lab and Evan will put the mask on himself. This made Evan feel much better. We told him the mask has a sleepy gas and he will fall asleep and Dr. M will take a tiny camera (I held up the post of the earring I was taking out and said - this size) and use a remote to guide it up to his heart to take pictures and then take the camera out and take the mask off and you will wake up and we will go home. Of course his response is... and then they will show the pictures to Dr. Austin and then I'll have to have surgery. I told him that, that is a possibility but reminded him of how awesome he did before. We talked for an hour at least... questions... answers... questions... answers... His need for security and stability are always so strong and he was only comforted when we were side by side talking or just being together. He slept well and the first words out of his mouth this morning were, "so it's just a cath right?" I'm praying he is having a good routine day at school. Teacher says he is doing fine.
A couple of weeks ago our support group, Team Brave Hearts, held a fundraising event at a UofL baseball event. It was an awesome day. Our Brave Heart kids got to come out on the field and our oldest Brave Heart read our mission statement. Evan got to throw the first pitch! After the 4th inning we had our Brave Hearts stand on top of the dug out holding signs that read THANK YOU while our oldest Brave Heart read a piece about our beloved surgeon, cardios and staff as they were brought on the field. It was a wonderful way for us to say thank you. UofL donated all food and drink monies that day to Team Brave Hearts - Thank you UofL for your awesome support. We have recently joined forces with Kosair Childrens Hospital Foundation and have an agreement to raise $100,000 to help build a Heart Patient only ICU. We are excited at the door opening to Kosair and our plans to help other families traveling the same path as ours. Enjoy the pictures of this awesome day.

Team Brave Hearts take the field

First Pitch

Receiving Baseballs (which Evan asked his surgeon to sign - how sweet)

Holding Thank You sign for the surgeon and cardiac team to see as they were entering the field to be recognized

Our Beloved Surgeon

Evan's favorite cardio nurses

Surgeon and a few of our Brave Heart kids (isn't it sweet that Evan & Alex are holding hands?)

Kindergarten Graduation Program

2010-05-24T15:25:00.007-04:00

Evan's teacher and her assistant did a wonderful Kindergarten end of year program with lots of songs and poems and reciting. Evan was so proud to show off all he had learned with his friends to us and Mamaw and Papaw. Each kid got to go out into the crowd and pick someone to come up and do a song with them - A Tootie Tah Tah. Evan loved having me up there - especially the part "bottoms up, tongue out."

Bottoms out...

Awesome teachers! What a wonderful year!

Proud Mamaw and Papaw

Proud Parents!

Photo Shoot AHA & UofL Coach Strong

2010-05-19T13:37:00.003-04:00

I feel so lucky and blessed to have such a strong network of heart friends locally and online. When myself and the other 2 first families met and started talking about making a support group called Team Brave Hearts I had no idea where it would take us and how much we would be able to accomplish together. When we met we wanted something to do... a way to connect and raise awareness. We started walking every year in our local American Heart Association Heart Walk and we grew and grew. Those walks definately have filled my heart with pride - walking with so many people wearing our shirts and everyone asking - who is Team Brave Hearts??? Our kids have been chosen (for the 2nd time) to be a part of the posters AHA puts around town promoting the walk. They are with the Univeristy of Louisville's new football coach - Coach Strong. The posters are suppose to say something like - The Strong family stands Strong for Kids with Heart Defects. It was such a neat experience and Evan just LOVED the coach. See below some of the pictures I took from the side lines.

UofL Baseball Game

2010-05-13T11:16:00.002-04:00

This invite has gone out to friends and family but I wanted to post it here as well. I'm so excited about this event!

I wanted to invite all of my friends and family to a FREE UofL baseball game, featuring our very own Brave Hearts. One of the kids are going to throw out the first pitch and we are going to recognize our surgeon and cardiologists. We also receive proceeds from food and drink sales and most importantly we are getting the word out about Congenital Heart Defects. We have recently redirected our fundraising efforts to concentrate on Kosair Children's Hospital. Specifically, we are raising money to help support heart families and to build a separate ICU for heart patients.

Come out and support Kosair Children's Hospital, U of L baseball, Team Brave Hearts and the many devoted pediatric heart specialists.

C stands for Cath and not Cancer

2010-05-06T15:08:00.004-04:00

I'm tired... I feel like I say that all the time but really, I am tired. I love my life - being a Mommy, working, running to Tae Kwon Do and baseball games. GO CUBS!

I've been sick pretty much since I started taking the full dose of Avonex a little over a month ago but, not as bad as I was warned so, I feel lucky. I had a horrible case of strep throat and then as soon as I quit the meds I came down with it again. I went to the Dr. and the strep was positive they also sent me for an xray as they were concerened with pnuemonia. The xray came back showing I did have it so I started antibiotics for it as well. It was recommened for a follow up xray in 10 days so I went for that. That was on the same day as Evan's cardio appt. It was decided there that we would have a cath. as soon at baseball season is over and surgery to follow unless a miracle happens in the cath lab. So looking at cath. in mid June and surgery in July. Sigh... I hate it. But he is my amazing little boy and I am the luckiest person to get to be his Mommy. By the way - he rides his bike now with no help whatsoever without training wheels & has his hair cut really really short (nickname chick magnet at school). So... we go to the baseball game and I cry with my best heart mama friends about the plans for cath and surgery. The next morning I'm up getting lunches and everything ready for the day and my phone rings. It was my Dr. and they want me to come in right now if I'm able to do a CT Scan. If you know me at all you know that isn't good enough for me so I begin to ask questions. What did they see? They saw no change so it must not be pneumonia with all the antibiotics you've been on. What are they checking for? For what it is. What do they think it could be? Oh.... umm.... it could be a subacute infection, or this or that or... cancer. I hungup and sat down in our spare bedroom on the other side of the house in fear I would wake Evan up and cried and cried and cried. This is the 2nd time since Christmas that my lymph nodes and other reasons have pointed Dr.'s to check for cancer. I was scared. I want to be okay, I have to be okay. But... who has cancer that didn't want to be okay? I was a mess that day. It was the latest I've ever dropped Evan off at school as I didn't want to wake him and him question my tear streaked face. He had enough to deal with just hearing he was having a cath the day before. My appointment was that afternoon and my parents were at my Dad's heart dr. appointment so between calling Eric, talking for a long time on the phone with my brother and a friend meeting me at Kohl's for some therapy shopping, I made it to time for my appointment. God put an angel in my path at the CT Scan. Like I said, I was a mess. The tech also had MS and was so comforting during the scan. It was a Friday and the scan wouldn't be read until Monday and she calmed me to be okay with that. However, that night my Dr. did call and it had been read. She said there were lymph nodes in my lungs that were calcified and that they were setting me up with a lung specialist - first thing Mon. morning. Again... I want to know what they are checking for and she said that it could be histoplasmosis, sarcoidosis, or something else and that they could not rule out cancer at that point. I went to the lung specialist and looking at the xrays and CT Scan he said he did not see any signs that lead him to believe it was cancer or sarcoidosis and that it looked like a classic histoplasmosis case - which by the way will go away on its own. I am following up in 6 months to make sure that things have stayed the same and no new places or the ones that are there haven't grown. I was relieved that he felt so confident but... my anxious self is still dealing with letting it go and not worrying. I have a problem... I admit that. I'm filled with anxiety and I'm constantly praying - talking myself down from a breakdown - giving it to God over and over again. For some reason I keep taking it back on myself but, again it is a constant battle raging within me. My MS is acting up - I'm not sleeping, I'm tired, my muscles ache. I'm sure it's stress.
So... that is the reason for my abscense. Oh... and work. The last year has been very rough on our group - unlike ever before. We thought things had calmed down but of all weeks, this week things are starting up again. Big changes. I fear more to come than we already know. That's just my anxious self talking again though. (I hate that I'm usually right!)

I'll leave you with a picture of Evan in our creek. We had a tremendous amount of rain last weekend and Evan (once the creek had gone down the next day) begged to put his boots on and fish for bull sharks!

Oh and another of his eyelashes when he fell asleep leaning against me. Aren't they beautiful?

Evan & Munc celebrating Munc's birthday.

Spring Break

2010-04-07T15:59:00.009-04:00

I'm going ahead and posting this with pictures although its 2 weeks overdo... I'll post again in a few days with an update.
It's Spring Break here! I didn't get the whole week but we have some fun things planned for the next 2 days I did get off work. An update from last post - I did not make it through that big weekend! Later that night after I posted I started running a fever and thought I was dying the next morning. Was in bed all day with 103 temp and finally crawled to the car to the immediate care late Sat. with a dx of strep throat. I got meds and called my SIL who came over and covered the party pretty much for me. Thanks Melynda!!! Easter was fun and busy. I loved being with our families. We are so blessed. My Dad is doing well... stubborn but, well. This is quick because I'm trying to get my few days off started but wanted to update. Enjoy the pics of Evan and his friends coloring Easter eggs at our house. Also I'm going to try to download these messages Evan is always saving on my phone. Hope you can hear them.

OK... I tried several times to load the video with Evan talking but... I just can't get it to work and now it's 2 weeks later and I still haven't posted... It's not a video just voice recording from my phone - any ideas on how to download it to post here? It's too cute not to share.

Thankful

2010-03-26T12:23:00.006-04:00

I've been so emotional and so thankful for my relationship with God to be there when I cry out to him. On Monday, the 15th I got a call at work that my Dad was having chest pain and was being taken to the local ER. My Mom told me to stay at work - that she would call when they got there. I remembered that they were running an errand for me and wanted to call her back to let her know that I would take care of it, not to worry. When I called she said she felt my Dad was worse than he had let on and that I should come. At the ER his blood enzymes were elevated so they admitted him and scheduled a stress test that was cancelled and a cath that was done the next day. The cath revealed 5 blockages. Open heart surgery was done on Fri., the 19th where a triple bypass was successful. Something cool - Evan's surgeon trained my Dad's surgeon. You would think after all I've seen with Evan this would be cake but... it's hard to see your Dad on the vent, restrained and confused. He is doing awesome - in true Dad fashion he went out to pick flowers yesterday - 6 days post op. He is driving my Mom crazy - my brother and I too. But, we wouldn't want it any other way.
Say a prayer for me and this weekend - after reading some of Kathy's post I don't think it's so bad after all.
I'm picking Evan up from school today
going to my parents to cut my Dad's hair and borrow some crystal
stopping at Kohls on the way home for David's 60th bday present
picking up the house
eating dinner
taking shot
tomorrow - get up and clean big time
Evan's batting practice
grocery big time
Evan's Tae Kwon Do exhibition
David's 60th bday party
Sun. - getting house decorated
preparing and setting up dinner
Eric's Mom and Dad's 50th wedding anniversary celebration AT MY HOUSE!!!

Cardio Update, MS Update, Bikes and a New Neice

2010-03-15T09:36:00.003-04:00

Spring is finally starting to bring us some sunshine! I'm so glad the snow is gone. Although... I did see on the forecast there is still a slight chance for it. I hope not. Last weekend was beautiful here - it felt so wonderful to sit on the porch and let Evan play outside. He is getting better and better riding his bike without training wheels. He did learn how to stop without just falling over ; )

We had a cardio appointment last Thur. I say it all the time but, we are so blessed with a wonderful cardiologist. Dr. M said Evan doesn't play by the rules and has his own ideas for his rollercoaster ride. There were no changes at all. Dr. M expected it to change and had planned a cath for Spring break but, that was CANCELLED! I know it's coming, surgery too, but I'm happy he is doing so well it can wait. We will go back next month and see what he has to say. For now... we had 6 yr old machine pitch baseball tryouts this past week! We will soon hear about the team and hope he and his buddies make it together again this year. Also, Evan has Orange belt testing for Tae Kwon Do this Sat. He is so serious. He just loves it! I'm so proud of him, the head guy came up to me last week and said, "Are you Evan's Mom? I just wanted to tell you he is one bright kid, seriously." I told Evan he said that and Evan just beamed. School is still going awesome for him too. He achieved above average on almost all levels of his testing and the teacher said the one he received average on they hadn't even covered the material for that yet. BTW I can't wait until it's short weather... I can't find pants to fit Evan for anything - 6 is too small - even 6x but, 7 is too big. Sigh.
As for me, I'm doing okay. After lots of red tape through insurance, drug company, copay assistance program and specialty pharmacy, I've finally started the shots for my MS treatment. I started Avonex 3 weeks ago. My dr. has me on a 1/4 dose increase over 4 weeks to the full dose. This past Friday I took 3/4 dose. The needle is huge and is quite intimidating - 1 1/4" and 23 gauge. I was surprised at how little it hurt though. A nurse came to our house and trained me on how to give it to myself and I'm doing good with that. I'm following all the hints and helpful advice I was given... lots of water day before and day of shot day, eat a good dinner, lay out shot for 3-4 hrs. before shot time, take Tylenol PM right at shot time, ice pack leg for 5 min., give shot and go to bed. I'm taking it every Fri. night at bedtime. I've been warned of the side effects that happen to 90%+ of people - they are flu like symptoms for up to 4 months after starting the shots. The few people I know personally that take the shots had severe chills about 3 hours after shot time. The first shot I had a slight headache - I'm not sure it was shot related though as I was so scared I probably gave myself the headache and I also set the alarm and took an extra dose of Tylenol PM (I won't do that again.) The second dose I had no reaction at all. This last week I did wake up very cold about 3 hours after the shot but was able to go back to sleep and felt fine Sat. morning. The nurse said I won't know for sure until I'm taking a full dose but, I'm hoping that I'm in the 10% that does fine.
We welcomed a new neice to my sister in laws family this past week! Evan is quite smitten with Taylor. She had some trouble breathing the morning she was born and was moved into the NICU. I had told Evan that he might not be able to go to TKD practice that night if we were needed at the hospital. He said, "oh... if they need us to follow the ambulance to Kosair, we should do that and I'll tell my Dr.'s and nurses." So sweet... She ended up not needing to be transferred and is doing fine. Evan was so excited to get to go see her and sat right next to me while I held her talking to her. He even asked if he could hold her! When Eric held her she started to cry and Evan had just gotten up, he came right back and said, "I think she likes me!" When we were leaving a nurse came in to take her to the nursery to be weighed and Evan looked at me and said, "Mom, we don't even know her - should we follow her?" Congratulations Megan and Joey - Welcome baby Taylor!

Cardio Update

2010-02-17T13:34:00.007-05:00

I'm sick of snow. I don't remember a winter when we have had so much snow here. The kids are going to be going to school all summer. They are already reporting another good storm this weekend. Please hurry Spring...
Last Tue. night Evan woke up running a temperature and complaining of his ear. By complaining I mean screaming "my ear, my ear" over and over. Poor thing. He finally calmed down and sat up in bed and watched TV. I got an appointment for him the next morning and of course he fell back asleep just when it was time to get him up to get ready. This is his first ear infection since he was 3 months old. We missed 2 full nights of sleep. Thankfully the medicine kicked in and he is all better now, just 2 days of meds left. Funny story about the medicine... The Dr. came in and looked him over and said, "Evan, you have an ear infection... I wonder what kind of medicine I should prescribe you." Evan responded with, "well, I know what your not going to give me and that's liquids. I vomit liquids and I need a shot or a pill and I like the plastic pills best." When we got home and I opened his medicine bottle and pulled out this huge 500mg Augmentin pills I thought he would change his mind but nope... he was so happy it wasn't liquid. Crazy kid.
Last Thur. we had a cardio appointment. This was our first since November so I was anxious to get back and see what our cardio had to say. After his echo he told us that there is just no way to know what exactly is going on with that left pulmonary artery without doing a cath. They can tell that the artery is narrowed with the echo but not why. The valve is doing great, no leaks. He thinks they should do a cath. to find out why the artery is narrowed. He believes Evan's body has caused it. He does believe the surgery will need to be done again soon and probably this Summer. We are going back in Mar. and will probably schedule a cath. for Spring break. At this point his heart was not enlarged so it seems to be handling this well. Evan's lpa has always been small and been the main reason for cath's/surgery. If Evan's body *causes* it narrow I asked wouldn't it just continue on a new one. The response was if that was why then yes but if they were able to put a really big one in and it narrowed a little bit and he didn't grow a lot it would be good enough. Evan had a huge growth spurt after this last surgery. Like 10lbs. and 2 inches in 6 months. The hopes were and would be again if the surgery was redone, that the artery would last until adulthood where they could do it one last time. In the mean time Evan is doing just fine so, we'll see in March what they say.

This was after the first snow looking out off our deck.

Evan and his snowman.

Evan turns 6!

2010-02-08T13:44:00.005-05:00

My baby turned 6 this past weekend! On Friday night we were watching movies and he crawled up in my lap and told me that he was going to miss being 5. I told him I was going to miss him being 5 but that I bet 6 was going to be awesome! We had some scare that the party would be snowed out and I threatened my closest friends that snow or no snow they better put in 4WD and be there! This party was paid for! We ended up lucking out of the big snow but several friends got stomach bugs and didn't make it : (
It was great fun for those that did though! Seriously, I think this was one of his funnest parties yet. I had it at the Tae Kwon Do place he goes to and MAN... they did everything. You know how those - we do all the work - parties usually are. The ones were you are running around ordering pizza and serving and getting more drinks. This was NOTHING like that. They asked Evan what he wanted his party and cake theme to be and of course he said Star Wars. We paid the party fee - which was less than his other parties - and that was it. We showed up and the cake was there - just like Evan had ordered. The instructors played over an hour of fun games with the kids. The adults had to learn some moves too! Kids broke boards and became Tae Kwon Do experts. They moved us into the other room and served us all pizza and drinks and then cake. When the party was over they came to me and asked which car was ours and loaded it with presents, cake and left over pizza. Wow... that was easy! Evan had a great day!
We have gotten quite a bit of snow the past few weeks. Enough of it if you ask me. GO AWAY! Spring come with all your pretty flower and sunshine. We are expected to be dumped on again tonight. Evan wants snow cream so bring it on but, after that please stop.
Enjoy snow and birthday pictures.

Evan's friends breaking boards!

Learning some moves

Evan being a black belt on his teacher

Jolly happy souls!

Some Thoughtful Moments

2010-01-29T14:20:00.006-05:00

Twice this week in the car Evan has had some really thoughtful moments. I wanted to capture them here because I knew I would forget exactly what he said. Earlier this week we were headed home and Evan asked how many days it was to his birthday. I replied that it was 10 days away. He then said that we hadn't been to see Dr. M lately and that he missed him. I told him we would be going again just a few days after his birthday. He said that going there was not like going to the Dr. but like going to see friends. (Awwwhhh...) I told him that I was glad he felt that way. Then he said... "Mommy... Dr. McOmber is my hero." I told him that if he felt that way that the next time we were there he should tell him that. He went on to say "I don't want anyone else touching my heart other than Dr. McOmber - you know... him and Dr. Austin - they kinda saved my life." By now I'm glad he can't see my face as tears are welling up and I choke out... "your right buddy, they did." And he was done and started talking all about his day. Believe me... he talks your ear off. He tells me in detail everyday when I pick him up about everything. He is so funny. And sweet.
So... today, we are getting in the car to go to school and he is talking about one of his close friends Lucas because he is pretty sick the past day or so and knew that meant no weekend play time for them. Lucas' family adopted our Jameson a year and a half ago. Evan said that he doesn't really like babies but that Jameson has always been sweet and that he has always loved baby Jameson... just like a brother. He went on saying how some friends are family and some friends are friends and was naming the ones he calls family. By now we had gotten to school and he had climbed into the front seat so I could drop him off in the car rider line. He continues to talk about our friends and is just rubbing my arm. So sweet in thought about the people we call family. Again... I hugged him tight and gave him kisses (which he still loves and allows me to do even in the car rider line) and out the door he went. These thoughtful moments I'll cherish forever.

Pillow Fighting

Time for Rest!

Yellow Belt

2010-01-19T16:21:00.004-05:00

Evan tested and was awarded his yellow belt in Tae Kwon Do this past weekend! He was so proud! He is really loving TKD. I had been taking him to lessons but I started a water aerobics class on TKD nights so Eric has been taking Evan. I have wanted to do something like that forever but I always feel so guilty going after work somewhere when I have already been gone all day. So, it's nice that Evan is busy with TKD while I'm doing that.
We had some snow. Enough to go sledding on! We went sledding everyday when we got home for 20 minutes or so. I should clarify that Eric and Evan went sledding and that Mommy stood from her bedroom window by the hent vent taking pictures! It pays off to have a big hill for a backyard on days like those.

My Dad turned 68 this past week. We are blessed to have him with us still. He was electrocuted 11 years ago with 15,000 volts at his job. I swear he has nine lives. He frustrates me to death but boy do I love him. Evan loves his Papaw!

My work moved locations after 11 years. I work at a big shipping company and we have several locations all over the city. I have been fortunate to work at one of the smaller more office like facilities for a long time. It was very convienant to run in and out. I'm at the airport now and there is lots of security getting in and tram rides to my office. The office itself isn't bad at all - just getting here that is a pain! I'm sure going to miss my old office...
I haven't started my Avonex (betaferon for MS) shots yet. I'm still working through insurance and pharmacy red tape. Once I do begin I will take the shot once a week on Friday evenings. Until my body adjust I'm warned that I could feel flu like symptoms for the first several months. I'm not looking forward to that. I keep telling everyone I'm going to be healthier than ever now that I know I have MS. I will start the shots, I've started water aerobics twice a week, I have lots of walking into my new office, I can't run out to lunch anymore, etc. etc. LOL.

Happy New Year!

2010-01-04T11:01:00.004-05:00

That is what my neurologist said late Thursday after one of our many phone calls. I just laughed and said, "Happy New Year to you too!" My spinal tap came back as another confirmation that I have MS. I have now had every test you can possibly have and they have all come back positive for MS. Thankfully most of the tests are back and they have tested negative for everything else, so it is just MS I'm dealing with. The neuro suggest immediate treatement with an interferon drug to slow the progress. I have a telephone conference with him today and I'm sure we will be setting up an appointment to get this started. My husband is not looking forward to giving me an intramuscular injection once a week but, I'm not looking forward to getting one either.
I have gone through all emotions hearing this news. I think I'm at - let's just deal with it - at this point. I was so angry last Wed. and just wanted to throw all the material in the garbage and not answer the neuro's phone calls. I wanted to stay home and in bed, leave me alone. A friend called and tried to get me up and going - thank God for good friends. I declined and stayed in bed all day. Eric and I have both been off for the holidays and I'm thankful. He has done all the running for me and that helped me be able to rest. I have been so physically tired of dealing with this. My mind goes and goes but my body feels tired. My friend called again New Years Eve and told me we were coming over and we were going to have fun! We had an awesome time and it was so good for me to draw me out of my funk. She had gotten a new game called Quelf and it was hilarious to see my friend running around the kitchen trying to get us to guess that she was a cowboy riding an ostrich on a beach and her husband was a beached whale. I have video of me having to spend the entire evening speaking like an evangelical preacher. We went outside with the kiddos and banged pots and pans and threw confetti to ring in the new year. My Mom and my brother took me to see the Broadway show this past Sun. of my favorite movie, White Christmas and that was so much fun! So bring on 2010!

Christmas 2009

2009-12-27T16:25:00.004-05:00

It's hard to believe Christmas is over and gone and 2010 is just days away. We had a blessed Christmas with family and friends. I Love Christmas - always makes our house look bare when we take down the tree and Christmas village. I told Eric that I think our house is made for Christmas... I just love it in the evening with the tree and village glowing. Evan wanted 2 things from Santa - a pogo stick and an air hockey table. Originally I had found a smaller air hockey table at Target but after attending a little boy's birthday party who had a mega daddy air hockey table Evan let us know that was the kind he wanted. Luckily Santa got a crazy deal and pulled through. Santa sent Evan an email video this year and that made Evan's eyes almost pop out of his head. Christmas morning Santa sent Evan on a Scavenger hunt to find his air hockey table and that was right up Evan's alley. My favorite gifts are the Shark floor steam cleaner and waterpik shower head. I love a clean house and a long shower! This year there was something new in Louisville to do at Christmas - http://www.louisvillemegacavern.com/pages/lights-under-louisville.php. We were excited and headed out with our BFF's. Two hours and $20 later I'm just glad we had friends with us so we can at least say we had a nice visit! Santa came through our neighborhood this year thanks to our local fire dept. That was AWESOME! I was so glad we were home and Evan even had some friends here so they got to share in that excitement too! We took Evan caroling for the first time this year. We went to a few nursing homes and the joy on the older peoples faces was priceless and Evan was a good sport and I believe felt good about the joy he was giving them. When saying prayers Christmas Eve Evan added "Happy Birthday Jesus." That made me smile... I hope we are never too busy to remember the real reason for the season. I've enjoyed Christmas and Evan's excitement. It's been a wonderful time and I'm sad to see it end.

I've dreaded tomorrow for a week now. Christmas ending meant the last of my test were a few days away. I've undergone most of the test already from the neuro and from the results of them he has confirmed a diagnosis of MS. The first meeting with the neuro did not raise many concerns and I was pretty sure nothing would come of the symptoms I've had the last few years. When the MRI came back with 11 lesions on my brain I cried for days. I'm mostly worried about not wanting to change (I know.) I want to be the Mom I am today still tomorrow and although I realize that more than likely I will be, I'm scared. I went through an electrical study and visual test a few weeks ago and they too came back abnormal too. These results haven't changed the way I feel (pretty normal) but hearing that diagnosis has definately been stressful. Guess what? Stress causes outbreaks of MS symptoms so that has been fun too... I'm stressed because I find out I have MS so I cause my legs to go numb because stress causes MS episodes. My symptoms started the Dec. after Evan was born with vertigo and then in 2007 and 2008 a period of leg numbness and some eye things that weren't explainable. I also started getting very very hot the last few years (early menopause?). Lately I've started having trouble getting up with my legs and bottoms of my feet hurting the first few seconds until I get moving. Come to find out all of these are MS symptoms. I go for my final test tomorrow. I'm dreading it. I'm having a spinal tap to confirm the diagnosis and to rule anything else out. Pray for me and for my neuro to know what medicine I need to slow the progression. I feel like I know lots about hearts (I don't but I feel like I do sometimes) but I'm clueless about MS so I have lots to learn.

Mommy needing your prayers...

2009-12-14T14:17:00.004-05:00

There has been some surprising events that have taken place since my last post. I had promised some picture updates but, everytime I come here to post I can't think so I logoff. So instead of avoiding the blog because I don't know what to say, I'll just go ahead and say it. For the past several years I have experienced some health issues that could either be symptoms of their own little things or when all put together symptoms of something larger. Because of some family history and the urging of my family Dr. to take care of myself I scheduled an appointment with a neuro. Although there wasn't much fear that something would come back they went ahead and did some test to make sure. The test did come back with something and to confirm the diagnosis more test are needed. Since my insurance changes in Jan. (not for the better) we are trying to get all of these test done this month. These test start tomorrow and aren't going to be fun. Say a prayer for me...

Evan is clueless to my own medical issues right now and I plan to keep it that way. He just started Tae Kwon Do and LOVES it! Man are those practices loud... I hear "AY YAH" in my sleep.

We are all decorated for Christmas and Evan is very excited. Does anyone else have elf magic in their families traditions? A girl at work is doing this with her little girl and it seems so cute. I keep debating if Evan should ask for an Elf to visit us...
http://www.elf-magic.com/

Jump Rope for Heart

2009-11-28T17:38:00.004-05:00

I'm going to have to break up this post into a few posts so as to keep them a little shorter! I've had the last week off and that did not equal extra blog time but I had a great week off with my little guy. I have pictures to share with each post - I promise!

The Friday before school was off for Thanksgiving break, Evan's school participated in Jump Rope for Heart. Evan brought home the little flyer that asked kids to jump for other kids whose hearts aren't perfect. The flyer asked you who you were jumping for, I just smiled and wrote in - "myself". AHA had the same little website set up as they do for the Heart Walk to raise money. Since I felt like I had just asked all family and friends to donate for the walk I didn't send emails out like crazy and just told grandparents and of course Munc. On Evan's website I put the same picture and story as I did for the walk to make it easy. One of Evan's heart buddies is also a school buddy and his Mom had set his little webpage up the same way. We talked about how awesome it was they were doing Jump Rope for Heart and that we should let the boys wear their heart walk Team Brave Hearts shirts the day they jumped. I was in the carpool line the next day and the vp came up to the car and asked that I pull into a parking place. She had a smile on her face so I figured my angel had done no wrong! I pulled in and the PE teacher came walking with Evan. They said they had heard Evan had had heart surgery (gasp - heard about it - you better have read that book I wrote when I registered him, LOL) and would I have a little something they could read to the school and show them Jump Rope for Heart helps kids just like them - kids even in their own school. I said of course... told them we had worked with AHA for the last 5 years and that Caleb was also a heart kid and they are on a team called Team Brave Hearts and they have little shirts that say I'm a Survivor... yada yada yada. They were thrilled we were willing to participate and Evan and Caleb were excited to be introduced to the school as Heart Heroes. Caleb's Mom and I worked together and made a flyer with some of their picture on it and a kid version story of their walk with heart defects. Caleb's Mom and I came to the Pep Rally with cameras and camcorder ready and proud smiles on our faces. The pep rally began with Jump Rope for Heart hoorays. The PE teacher was called up and said she wanted to share a story and read the flyer and then told the kids that these 2 Heart Heroes were Falcon students and they began to cheer. Evan and Caleb stood up and walked to the front with their little arms linked. We stood with tears streaming at how awesome it was that our school would recognize them in such a way. Evan and Caleb said that they got "big applause." I think they both felt very special! Isn't that awesome?!? Enjoy the picture of the Falcon Heart Heroes.

Cardio Appointment Update

2009-11-11T09:45:00.003-05:00

Evan had a cardio appointment yesterday. I love that Evan loves to go there. He pictures it more going to visit friends than going to the Dr. That speaks for just how awesome our Dr. and his staff are. While doing the echo Dr. McOmber and Evan just talked and laughed trading Disney stories as he went the week after us. When he was done Evan asked Dr. McOmber if everything was great and he told him that the straw wasn't great - Evan asked him if it was broken and he told him absolutely not and that no cath was needed - Evan gave a big waahoo to this. Dr. McOmber told us that there has been no change since June. Since the pressures changed so quickly from April to June he expected them to continue to get worse and that isn't happening. We expected to be scheduled for a cath. on Christmas break but Dr. said that since there isn't a need for something to be done right now he didn't think it was time for a cath. He said that Evan's heart looks great, the donor valve isn't leaking one bit and his heart isn't enlarged. This pesky left pulmonary artery is always going to give us fits I guess. So we were told to have a wonderful holiday season and we could come back in Feb.! He did reassure us that if he thought Evan was going to need a cath in early 2010 he would go ahead now while he was on break but that, he didn't think that would happen. Evan has now gone 1 whole year without a cath, surgery or even a vent scan!

Have to share something funny that happened this morning. Last Fri. I went Christmas shopping and got some great deals. I put all the stuff in the very back of our Explorer and told Eric to make sure to move it to the basement and hide it when he got home. Eric has been working 16 hr. days and hasn't been home to move the stuff. I can't move it because Evan is always with me. That leads me to this morning...When I get into the car rider line at school, Evan always unbuckles and gets into the front passenger seat. Today when we got there he unbuckled but stayed in the back seat bouncing around and then I heard,
Evan - "OOOOHHHH, MOM - I SEE BENDAROOS!!!"
Thankfully his little friends birthday is Sat. and that is what we got him. I said, "Evan, get up here now, those are for Lucas."
Evan - "OOOHH MOMMY, I think I saw something big and it was black and red was it something Micky Mouse? You know I had Bendaroos on my list too... I really want Bendaroos - you didn't forget did you?"
Mommy - "I didn't forget but don't look back there anymore. There are things for you from Mommy and Daddy for Christmas. If you see them I will have to take them back."
Evan starts crying - "Mommy... I think I did see Pixos... please don't take it back."
Mommy - "Don't look again and I won't take anything back."
Evan - "Well then can you tell me if I saw Pixos and what else is back there? If you tell me I will tell you what I'm getting you for Christmas."
Mommy - "I don't want to know what I'm getting for Christmas and no I'm not telling you."
Evan - "Okay... I can't wait for Christmas. I've only been bad a few times for for the most part I've been really good."

The rest of the time he talked all about Santa and was so excited. I hate that he saw his gift but hopefully he isn't sure and it was so cute!

Enjoy a pic from Disney of my brother and Evan.

Prayers Needed

2009-11-09T10:57:00.002-05:00

Lots of prayers are needed today for several friends and family.

Pray for Elijah who is in a cath right now http://www.babyporta.blogspot.com/

Pray for Stellan who is not doing well and needs to be stable for an emergency procedure to save his little life http://www.mycharmingkids.net/

My Aunt Gwen is not doing well and was admitted to a local hospital yesterday and is in ICU. They know she had a stroke earlier in the week and that she had not been giving herself her insulin shots. She is having seizures and vomiting. This Aunt is the grandma of my cousin I have asked prayer for before who is battling cancer. Please pray for the family.

Evan's cardiologist appointment is tomorrow. Pray for Evan's pressure to remain stable.

Disney

2009-10-27T16:01:00.002-04:00

We had a magical 7 days at Disney! It was amazing… the parade and the fireworks every night… I felt like we got to see almost everything. I'm glad we spent 7 days. I don't think we would have enjoyed it as much and got to do as much as we did if we had spent less time. I also think anymore than 7 would be just too much. We were very tired when we got home on Sat. We all had our moments of "I've had enough of all of you" but… no fights and no issues. Evan wanted everything he saw so he had a few melt downs when he didn't get it. How strategic of Disney to put you in a store at each ride and show exit. Evan definately got his share of stuff although he might disagree... he wanted everything! What kid wouldn't?

On Sat. when we got there we went straight to Magic Kingdom and rode Buzz Lightyear (Evan's favorite the whole trip) and saw the parade and fireworks. The parade at Magic Kingdom is magical! It was one of my favorites. Before the parade began Evan met a little friend and the street was empty in preperation for the parade - Evan and his new little friend put on a complete show... they were so cute.

On Sun. we went to Animal Kingdom. Evan DID NOT like the ride Dinosaur. It was scary and although I thought my little guy would LOVE it, he didn't. From that point on he asked before every show and ride if it was going to be scary or not. We LOVED the shows at Animal Kingdom, Bugs Life, Lion King and Nemo. The Safari ride there was like we were in Africa - Loved that. Funny story that I was tempted not to share but... here goes. When Mamaw picked us up at the Airport on Sat. Evan exploded with stories to tell her... one of the first ones out of his mouth was this... "Mamaw, we went and saw a Bugs Life show and they had this ass bug and he shot ass at us." Eric and I were looking at each other like what the heck is he talking about and it hit me... there was an acid bug that Flik told not to shot acid at the humans... only my son.

On Mon. we went to Epcot. Soarin was the best!!! We all really enjoyed that. There was an interactive show there with Crush from Nemo and that was really neat too... in a how do they do that kinda way. Crush interacts with the audience differently at every show but it is a cartoon - I don't know - very cool! We all rode Test Track which is a race car and Evan screamed "RADICAL" through the whole ride. So funny... where did he get radical from? The fireworks show at Epcot is really cool and we went back Fri. night to do Soarin and see the fireworks again.

On Tue. we took a break and swam and played at the playground. After dinner Evan and I went trick or treating at Magic Kingdom. This is an extra charge and isn't included in our 7 day hopper pass. I would say it was worth it though. Evan and I had a great time doing Haunted Mansion at night. One of my best moments from Disney happened that night during the fireworks. Evan was standing in his stroller and I had it locked and was standing next to it holding on to him and he kept leaning over and kissing me on my cheek and telling me he loved me. I had tears in my eyes thinking how blessed I was to be sharing that moment with him.

On Wed. we spent the day at Magic Kingdom. Tomorrowland is Evan's favorite place here. He loves the Buzz ride and Stich ride. He also loved the Monsters Inc. Laugh Floor comedy show. My brother and I got picked to be a "part" of the show - I had to yodel and my brother was "that guy" - that little girl is the cutest thing I've ever seen - except for that guy and pops up a picture of my brother on the screen. Evan kept patting Munc's arm saying he was sorry.. he thought they were making fun of him. It was hilarious. Of course we had to do It's a Small World, Dumbo, Peter Pan, Snow White and the tea cups! Evan did Splash Mountain and did not like that drop... again another scary ride. Evan loved driving me and Munc in the race cars!

On Thur. we spent the day at Hollywood Studios! This was one of Evan's favorites for sure! He got picked for Jedi Training to become a Jedi. There were a bunch of kids and the lady said that when the Jedi Master came out he would pick 10 so to jump up and down and scream. Evan jumped and screamed with the best of them but I was worried he wouldn't get pick. I believe he was the last one and when he looked over and said - that little boy with the Star Wars shirt - Evan's face became serious and up on stage he went. It was so cute. He was given a robe and a light saber. His face remained serious the entire time. After training Darth Vader came out and fought each of the kids and they had to use their training. When it was Evan's turn after the duel Darth Vader said the force was strong with this one and his Storm Troopers came up and the Jedi Master told Evan to use his force on them. This didn't happen to any other kid so of course this confirms to Evan that he is for real a Jedi Knight. He loved the Indiana Jones show, Stunt Car Show and Toy Story ride here.

On Fri. we went back to Magic Kingdom to Tomorrowland to do Evan's favorites again. We went back to our room at lunch to pack and Evan got some more swim time. At dinner time it was off to Epcot again for Soarin and fireworks.

We got up early Sat. for our flight home. If you go do the Magical Express... they handle your luggage and your transportation makes it very very nice. The plane ride was fine both to and from Disney. Right before we landed in Orlando Evan said he had to pee and he usually can hold it forever so I told him we would go as soon as we got off the plane that the seatbelt lights were already on. Next thing I knew I look over and he is crying saying he really really had to go. I asked the flight attendent if there was any way we could get up and he said not really but that he would turn his head and if we got up he wouldn't stop us. Evan and I jumped up and ran to the bathroom - he was still peeing when the wheels came out for us to land!
When we got home on Sat. we all went our separate ways and enjoyed quiet time and fell asleep by 8 and slept for 12 hours and then all stayed pretty quiet and doing our own thing Sun. We were glad to be home. Evan just wanted to play with his toys and that was fine with me!

We loved Disney and I'm so glad we got to experience it. I can't say I would want to go again anytime soon or every year on vacation. I think once and then maybe another time on down the road. I am glad we went when we did… Evan still found magic in everything and that is exactly what I hoped for.

Walt Disney World

2009-10-26T13:08:00.001-04:00

Disney Bound!!!

2009-10-16T10:10:00.002-04:00

We are boarding Evan's 1st plane ride tomorrow morning and landing in Disney tomorrow afternoon!!! We are soooo excited! I won't be able to post pictures here until I get back but will be putting pictures on my FB account. If you want me to add you as a friend so you can see the pics email me with your account name and I will add you!

Evan's Halloween Party

2009-10-12T10:13:00.002-04:00

Happy 1 year Mendaversary Evan!!!

2009-10-06T17:08:00.003-04:00

http://evanbraveheart.blogspot.com/2008_10_01_archive.html

I smiled through tears this morning when Evan bounced out of the car and ran into school thinking of what he was enduring one year ago today. So thankful...

Career Day 2009

2009-09-29T16:20:00.002-04:00

As promised a picture of Evan and his heart buddy Caleb dressed up as Dr.'s for Career Day.

We are counting down days for Disney!!! Munc made Evan a paper chain for counting down and he remembers every morning to tear one off - it is so exciting seeing that paper chain get smaller and smaller.

We are also planning a small Halloween party at our house the weekend before we leave. Evan LOVES Halloween and this has been something he has asked to have for a long time.

I Love Fall!

Career Day

2009-09-19T09:22:00.003-04:00

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

2009-09-02T10:01:00.003-04:00

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

2009-08-28T21:40:00.002-04:00

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!

2009-08-23T18:43:00.002-04:00

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.

2009-08-20T09:32:00.001-04:00

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

The Kissing Hand and School Days

2009-08-13T16:46:00.002-04:00

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

2009-08-11T11:29:00.003-04:00

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

2009-08-02T09:23:00.006-04:00

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

2009-07-28T10:06:00.004-04:00

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

2009-07-25T08:58:00.005-04:00

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

2009-07-21T10:36:00.003-04:00

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

2009-07-16T18:52:00.003-04:00

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

2009-07-16T08:14:00.000-04:00

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

Rockies Award Party

2009-07-15T10:47:00.003-04:00

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

2009-07-08T09:59:00.003-04:00

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

2009-06-18T17:44:00.003-04:00

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

2009-06-16T09:08:00.004-04:00

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

2009-06-09T09:08:00.003-04:00

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

2009-06-08T10:51:00.003-04:00

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

2009-05-27T10:03:00.002-04:00

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

2009-05-22T07:03:00.003-04:00

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

2009-05-09T21:48:00.003-04:00

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

2009-05-09T21:47:00.000-04:00

My Little Star

2009-05-04T18:54:00.005-04:00

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

2009-04-30T14:46:00.004-04:00

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

2009-04-21T10:35:00.002-04:00

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

2009-04-13T14:48:00.003-04:00

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. Enjoy the pics from the parade.

Swingset

2009-03-31T16:15:00.007-04:00

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

2009-03-25T09:55:00.002-04:00

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!

2009-03-23T18:39:00.005-04:00

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?

2009-03-16T08:59:00.002-04:00

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

2009-03-11T11:50:00.006-04:00

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

2009-03-04T20:42:00.003-05:00

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

2009-03-02T14:30:00.004-05:00

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

2009-02-23T10:01:00.003-05:00