Christmas 2009

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...

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

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

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

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

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

Disney Bound!!!

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

Happy 1 year Mendaversary Evan!!!

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

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

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

Heart Walk

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



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

Star of the Month

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

Disney Approved!

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

Cardio Appt.

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

The Kissing Hand and School Days

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

Evans 1st Day of Kindergarten

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

University of Louisville Collegiate Chorale & Cardinal Singers

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

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

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

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

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

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

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

Pray for Elliot

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

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

Blessed with Wonderful Work Friends - Pray for Elliot

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

A Day with Munc

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

Another Month & School

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

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

Monthly Cardio Visit

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

Rockies Award Party

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

Non Cooking Sweet Tea Summer

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

Appointment Update

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

Survivor night at the Bats

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

Kosair Night at the Bats game

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

Fun weekend w/ friends

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

Pitiful

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

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

Upsetting Cardio Visit

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

Preschool Graduation

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

Preschool Graduation