Sneak Peak

We have had our first meeting and are starting our fundraising season for our local AHA Heart Walk, which will be on Sept. 27th. We were missing a handle of families last night but... isn't this wonderful - all these beautiful children together for a cause. We are excited!!!

Our Little TBall Star!

Back to the cath. lab

Dr. McOmber called and said that he met with the board on Mon. evening and that I'll be getting a call from Dr. Kim to schedule the cath. Dr. Kim is replacing Dr. Recto and has been training with him for a year or more... Dr. Recto is moving to New Orleans.
He said the same thing we talked about before... he doesn't want to miss out on time when they might regret it in the future... Dr. Kim thought that the decrease in %'s the scan showed (80-20) needs a cath. to check things out and either dialate the stent or insert another one, Dr. McOmber agrees. He said Dr. Kim is very busy, summer surgeries trying to get in before school starts and before cold/flu/RSV season for little ones.... But that, Dr. Kim's office will be calling me to schedule it. Dr. Kim wants to review Evan's file, past cath's and past scans before scheduling the cath, so he wasn't sure when I would hear from him but soon.
So... the waiting begins again. I was mostly expecting the cath. but was going to be super happy if they thought it could wait. As always I just want the best for Evan and have to trust God and our beloved Dr. that this is what is best.
In the meantime... we will continue to enjoy summer. Hope all of you are as well.

Baseball weekend

I still haven't heard from the board... Dr. McOmber called last week to let us know the board meeting had been cancelled for the week and they would meet today so, I should hear from him tonight or tomorrow concerning cath or no cath.

We have been busy... T-ball practice is on Thur. nights and then the game is Sat. mornings. We love the time we are spending with friends though.

My brother and his family were taking their other nephew, Nick, to the Louisville Sluggers Field to watch the Riverbats play Sat. night and invited us along. Evan loves Nick... bugs the heck out of him, LOL. It was sooo hot... but when the sun went down it was super nice and enjoyable.

Happy Father's Day!

We are busy, busy and having lots of fun! I'm loving the time we've been able to spend with friends and family this past week or so and the summer is going to be so much fun... Evan started T-Ball and we are spending Thur. evening with his best buds and then again Sat. mornings for games... Go Almond Joy's, LOL!!! It's HOT but... FUN!!! Remember the commercial for Almond Joy's - maybe I shouldn't have taught it to Evan... Eric said it is not appropriate that he is singing "Almond Joy's got nuts..." I hope they don't play the Mounds. So, T-Ball twice this week, swimming at Nana's (my BFF of 30 yrs. Mom's), ending with a night at the Drive-In's - we had a fun week! We saw Kung Fu Panda (really good) and Indiana Jones (can you believe it is Evan and Eric who stayed awake for BOTH movies?).

It has been sooo hot and Evan had been wanting to get his hair all cut off like his Daddy's so, what do you think? I was so scared but... I really like it! We got a pool for Mamaw's to beat the heat... don't you all remember the pools we had as kids? You blew them up yourself and filled them with water or even the hard plastic kind? We have nothing like that available here - it is all these huge pools that took even an electric air pump an hour to blow up and then another hour to fill half way with water.... by the time you get done you wish you could put it away but, with 2 hrs. of work... it is getting a plastic cover... we might as well gotten a real pool, LOL. Evan loves it.

One of our heart friend families here in Lou. has been trying to adopt from Korea for well over a year and I'm so excited to say that their baby will be home sometime this summer and am going to ask permission to post their new additions pic here. I can't wait!!!

Happy Father's Day to all the Dad's out there! This blog I wrote back in 2006 about my guy's still rings true - I LOVE YOU ALL!!! http://evanbraveheart.blogspot.com/2006/06/men-in-my-life.html

Dr.'s thoughts on scan

Just talked to Dr. McOmber.... he said he wasn't really surprised that the LPA's % of pressure that it sends to the lungs had gone down again... Evan is growing - everything is growing except for that Left Pulmonary Artery - which is the same size since they stented it in Mar. 2006. He is not sure if it is time for another cath. so he is taking it to the board to get the other Dr.'s, especially Dr. Recto the angio specialist in our areas that did his stent, opinion. He said the reason for this would be to prevent Evan's health from ever being less than his 100%.... that we should not see Evan get worse b/c they are keeping on top of things with the tests/scans and caths. He also said this continious drop of 4-5% pressure a year is normal since his is growing and does not mean the conduit/valve replacement surgery is sooner than they originally hoped, that they still hope to hold off until his is larger and could possibly get an adult size with 1 final surgery - or who knows how technology could change before he needs that. That as long as they stay on top of it with scans and caths we can delay surgery and hope for a less invasive approach by the time it is required. He said he thinks Dr. Recto will want to do another cath. maybe not tomorrow but, maybe in 6 months or after next years scan and either dialate the stent or place a stent inside of the old stent expanding it... He said he would be talking to me later this week after he presents Evan's scan to the board at their weekly.

We spent a nice weekend together, playing T-Ball and going to the Circus. I had a not so nice ear infection and at my follow up for broncitis got more meds for that and also told broncitis had gone into pneumonia... Am I ever going to get over all of this??? Dr. said something about rest... drinking lots of fluids... staying out of the heat... I'm wondering if we live in the same town with how hot is has been and also if they have any children, LOL.

Vent. Scan 2008 Results

I just got the results last night, (was beginning to get worried that the hospital lost the test since they took so long to forward it to the cardio - oh how mad I was going to be, after what he went through if he had to do it again.) right before Evan's first T-Ball practice for the year, man it was so hot. I'm not sure what the results mean as another Dr. called and gave them to me b/c Dr. McOmber is on vaca. until Monday. The results were 80-20.... they were 85-15 before the stent and then the stent raised it to 71-29 and then last year is was 76-24. So... it has been worse - right before the stent in '06 but... they were concerned last year with the 76-24 and it is another 4%... seems to decrease on the left side 4-5% every year.... although they did a cath. last year and didn't do anything so maybe this will be okay... I really have no idea until I talk to Dr. McOmber.

This hasn't been the best of weeks for me.... I've been full of anxiety waiting on these results and now that I have them, I can't talk to Dr. M until Monday. We also got more upsetting news that the house we had held a contract open on since our house contract that fell through, in hopes that when our house eventually sold we could move in, asked us to release them from the on-going contract. I can't blame them as it has been since March but... disappointing for us. I know this means there is something better for us... that maybe this house wasn't meant for us, it is still hard once you set your heart on something.

This is also Eric's busy time of year and we practically haven't seen him since last Friday. We miss him and it is hard for Evan when he isn't home at night.

We have planned lots of family time this weekend! We are taking Evan to the Ringling Bros. and Barnum & Bailey Circus tomorrow!!!

He's Brave

I cannot tell you how proud this Mama is of my little Braveheart... I have had several talks with him this past week about how we go have this scan every year and that it is time again for it. He definately remembers it and remembers how the worst part is the Versed they shoot up his nose to calm him down before the IV and sedation. I told him that Dr. McOmber said that since he is so Brave, that he could do it without the yucky nose medicine but that he still would have to have 1 shot or IV but after that all he would have to do is stay still for the pictures and then we could do whatever we wanted the rest of the day instead of spending it trying to come off sedation. The first time we talked he cried but was sure he did not want any yucky Versed. He brought it up almost everyday and seemed to be handling it well. Thursday night Evan could not sleep and was complaining with his ear and started running a fever. We were up most the night and Fri. morning I was sure they would probably cancel the scan. His fever was so low we went ahead and took him. At Kosair they said that since he wasn't going to be sedated and his fever was so low they could go ahead with the scan. They looked at his veins to see if he could just receive the shot of nuclear med's but couldn't find a could enough vein to take it so they sent him for an IV. Let me tell you.... out of 4 nurses, 2 parents and 1 child - there was not a dry eye in the tiny room. As soon as they started looking for a vein he started saying, "I'm Brave... I'm Brave... I'm Brave...." After digging for a while, Evan looked over at the nurse that was giving the IV and said, "I'm Brave but, can I cry?" We all assured him that even Brave boys cry and continued through tears to let everyone know he was determined to be Brave. When she (finally) got the IV everyone cheered, included Evan - did high fives, hugs. At one point during the celebration a Dr. walked by the room and asked how many nurses it took and we all through tears laughed and told the Dr. that we were celebrating one Brave little boy. Evan walked with us back over to Nuclear Med. and talked the nurse, Monika's head off. She asked him to climb up on the table and she gave his straw (IV) a drink and then asked him to please lay still and not move and started Scooby Doo for him. Evan layed there and talked through the 15 min. scan without one complaint or movement. Once done with the scan we headed over to his pedi. since he was running a low temp. and he has an ear infection so we started antibiotics. He told all his pedi. Dr. friends about his bravery and they insured us a trip to the Zoo would be just fine to celebrate so, off we went. We had a beautiful day and enjoyed having the 3 of us together strolling through the zoo when normally we would still be at the hospital waking up from sedation. I actually stopped at the Immediate Care on the way home as I wasn't feeling so great and was given a shot and 2 med's for diagnosis of - horrible crazy allergies, sinus infection & broncitis, nothing like living in the Ohio Valley to keep a person with horrible crazy allergies sick.

Pic's are of Evan just outside the hospital in a log playhouse and then at the zoo. We will probably know the results of the scan on Monday.

Last Day of Pre-School & Vent Scan #4

I can't believe it, Evan's last day of his 1st year of preschool has come. I don't think he understands that he won't be going back for several months and that when he does he will not be in Ms. Tracy's class. I've told him this information but, I know he would be more upset if he really understood. He does get a sad look on his face when I told him this morning that this was his last day. Crazy for the kid who cried everyday the first couple of weeks. He never did make it through nap time, although I guess we didn't try, it just worked out for Mamaw to pick him up everyday right at naptime so maybe we'll try again next year. I wish I could slow down time and I'm glad he has 1 more year of preschool before kindegarden. I'm sure I'll be asked a kazillion times this summer if it is a school day, when do I go to school and I miss Ms. Tracy. Ms. Tracy - if you followed the link and miss Evan terribly during the summer give me a call, I'm sure my Mom would welcome the day off, LOL!

Next Friday Evan will be enduring his 4th Ventilation Profusion Scan at Kosair. For us this is a yearly deal due to that pesky narrowed left pulmonary artery. I hate having the test done, I hate waiting for the results and I hate when the results say we need a cath (which so far has been everytime.) There I got that out. Before Evan had a stent implementation in '06, the 1st Vent. Scan showed 85% pressure going to the right and 15% going to the left, after the stent it was R-71% & L-29%. Last Mar. it was R-76% and L-24%. They did another cath. last Apr. and decided that they would keep an eye on it but that Evan would definately need a conduit/valve replacement in the future but when in the future is unknown, even saying if we could wait until he was 10-12 he might be big enough for an adult size. Join us in prayer that the Doctors make the right decisions on when is the right time. For me... I pray the the %'s haven't changed much since last year and that a cath. isn't needed. Also pray for Evan, the hospital called today and b/c of his age and his cooperativeness the last few visits they would like to do the scan with no sedation. The less he is sedated the better but, I'm not sure he can handle the shot or IV of radioactive dye and not need sedation. Please pray for a wonderful nurse that gets him on the first stick and for us to be able to calm him (bribe him) into staying still on the table for the scan. I have a new webkinz on hand from his favorite girl, Olivia and a promised trip to the zoo up my sleeve for that day, any other suggestions.

Enjoy pic's of Evan's last day at school - one with the director who will be retiring and the other with his teacher.

I'm too old for Slumber Parties & Mother's Day

My BFF at work, Angie has 2 daughters and a little boy. Her little boy, Robert, is one of Evan's friends and they get to spend time together in the summer playing T-Ball and sometimes going to the zoo, swimming lessons and such. Evan likes Robert but, Evan (see his birthday pic's) LOVES Robert's sisters who are 10 and 13. We constantly have to tell Evan that he is NOT Olivia or Kristen's boyfriend and needs to leave them alone - he is always saying he wants to kiss them or take them on a date, oiy I have a ladies man on my hands. He even worries about his hair and clothes if he thinks he is going to get a chance to see them. They are very pretty girls and boy would I be lucky if it did work out but, I think he will run them off chasing after them! Angie's oldest daughter, Kristen, was turning 13 this weekend and Angie had decided to throw her a very special hotel/indoor waterpark birthday party and asked me to help her chapherone the party Sat. night. I was so happy to get a chance to do girly things and hang out with one of my BFF's for the evening. I think we had more fun than they did - we probably went down the waterslides 20 times! After the girls got over that we were NOT letting them run around the hotel or the lobby chasing after some *hot* guys they saw at the waterpark, they had fun too - all the way up to 4:30am Sun. morning, LOL!!! We didn't dare go to sleep before they did in fear of shaving cream. Thanks for sharing the fun Angie, Kristen and Olivia!!!

Evan and Eric picked me up Sun. morning and treated me to my favorite breakfast at Cracker Barrel - brought me the most beautiful bouquet that Evan made at school out of tissue paper and markers and the sweetest cards - toughie me even cried. We went home and took a lovely (and much needed) afternoon nap. My brother and his family treated me, my Mom and my brother's SIL and her family to a delicious dinner at their house where I was spoiled with Barbara Walters book, a pair of the most comfy socks, a bookmark and dark chocolate!!!

What was most special -

That I have the Best Mom in the World who taught me everything I know and whom I consider my very Best Friend - Mom, I Love You!!!

That when I look at Evan I know that I'm so lucky God chose me to be his Mommy.... I Love him with everything I am - even when he jumps off the chair into my Mom's curio and breaks the glass out - thank God he didn't get a scratch.

That I have a husband that let's me go spend a fun night with friends and makes Evan feel special having a guy's night so I don't worry about him missing me (too much) and who let's me know how much he appreciates me. Evan has been seeing Dominoes commercials and kept wanting some - I'm more of a Little Ceasars pizza kind of girl so on guys night they had Dominoes and went and saw the puppies!

Thanks for treating me and Mom to dinner Munc and family - you always know how to spoil us girls!

House on the market, Puppies and Kidney Stones, oh my!

That's what has been going on in our world the last few weeks. After 45 days of working with the couple that had a contract on our house and doing EVERYTHING they asked, they asked to be let out of the contract, ARGH!!! I know God has a perfect plan for us and although I do not know what that plan is or where he wants us, I'm praying and trusting his will. Our house is back on the market.

During my 'bout with strep throat the Dr. was concerned that my kidney had taken a hit due to the lack of fluids I had before finally getting to the Dr. Two weeks after I got over strep, I started having some lower abdominal pain which I passed off as regular monthly cramps. Days later and nothing else to blame the pains on I went back to the Dr. who did a few tests. The first was a pregnancy test and funny story, the Dr. came back in getting ready to do a full exam and asked the nurse if she had checked the results of the prego test and she said no. He said something else but, I didn't hear him. She came back in the room and said, yes it is. I about jumped off the table and said, "WHAT????" She replied, "what, it's negative, Dr. asked me before I walked out if it was negative and when I came back, I said, Yes it is." LOL.... I'm going to pay her back for that. The conclusion was that I needed further testing due to my families history of severe kidney stones. I have never had them. I went to the hospital on Monday and got a call later that I have several on the left and even MORE on the right, ARGH!! I go to the Urologist on Monday to decide if I need laser or if they can be passed, which I doubt since it has already been like 3 weeks.

With all that has been going on with me I feel I'm in the Refiner's fire but, I'm learning so much. Maybe this was the point of it all. That, I'm not the one in control of everything and definately not the best to be given that job. I'm learning Lord.... I want things to let up but, maybe he is not finished with me yet. Thankfully I'm still laughing at myself so that is a good thing! My husband says that these stones have given me attitude and I know everyone that knows me personally would agree that I'm usually a kind and quiet girl not this dramatic sarcastic girl I've been lately, LOL!

I'm posting pictures of Evan's Granny & Papaw Harry's new puppies - aren't they cute?

Hope everyone has a Happy Mother's Day!

Greatest Munc

We are still in the negotiating phase of the contract on our house and only have a week or so to get things done or the contract will be over. Thank you for your prayers - keep them coming.
I have learned a lot during this process, maybe that was the point. I worked myself up so much - to the point last week that everything crashed and I became very sick. I was in bed for 3 days - 2 of them with a fever of 103.8 - the absolute worse case of strep throat I've ever had. My anxiety always gets the best of me and I'm thankful for the lessons I've learned and am feeling at peace trusting that Jesus will makes things right and just what we need.

This Friday is my brother's birthday and we got to celebrate with him and his family this past Sunday. When I was feeling better late last week Evan and I went with my Mom shopping and Evan wanted to get Munc (his nickname for his Uncle Michael) a card just from him. He picked it out and was very excited. On Saturday we wrapped his gift and Evan got out his crayons and decorated the card and signed his name to it. He wanted me to find some stickers but, I couldn't find any other than the Hallmark sticker to close the envelope with - Evan wanted more so he asked for his crayons again and decorated the outside of the card. As he was coloring he said, "Mommy, this looks like scribbles, will Munc like it?" I answered of course that his coloring was beautiful. He continued to color and said, "For my Munc, the greatest Munc I've ever had!" With that he was done and handed the card over with a smile, knowing, especially after the story was shared that his card would be Munc's most beloved present.

Isn't he the cutest?

Continue to pray for us concerning the move... I'm hesitant to post more here because you just never know. Things are fine with the house we are looking at but the buyers on our house are the question. Just pray for God's will and peace for us.

Evan is continuing on this new sensitive phase of his. He has changed a lot the past few months. He seems shy - something that for any of you that really know him know that this is new. He also seems very very very sensitive. There have been lots of hurt feelings and tears lately. We were asked to attend a function at UofL's Dancethon to raise money for Kosair Childrens Hospital and we went with our heart group - Team Brave Hearts. 3 months ago Evan would have been up there dancing his boody off with all those sorority girls - this time he cried and clung to my leg and Eric or I held him the first 1/2 hr. we were there. He did loosen up a bit later and finally allowed the face paint lady to paint a batman on him. Any of you hear about the Singulair scare? His doctors called and asked if I had noticed a change in his behavior since he was put on it (back a few months ago when he was diagnosed w/ Asthma) and I said yes, but probably for other reasons (the move, the Easter Story) and he said to take him off of it anyway. SO..... now we are dealing with a very boggery nose too.

Check out this picture taken of Evan this evening... isn't he wonderful? He has some long lashes.

Please pray for our heart friend Elijah (see link to right) and drop a message and let his Mama and Daddy know your joining them in prayer for his surgery next week.

Easter Story Mix-Up

Continue to pray for us.... why didn't anyone tell us the process of selling a home is so difficult! This is our first time selling a home and I just keep wondering if all is going okay. There is really no reason for me to think otherwise but.... I am famous for my worrying. I'm constantly reminded by friends and family to "Cast all your cares on him, for he cares for you."

Also pray for Evan... he is having a hard time even thinking about moving. He doesn't understand that everything goes with us and he knows nothing different than this is home so, he is quite scared. We have tried very hard to involve him and make sure he understands that everything goes with us. He has been very emotional and we seem to find him in deep thought worrying about (he is my son!) all of this.

ALSO... he goes to a Christian preschool and they told a kid friendly version of the Easter story last Wed. at school. Eric & I are happy that he is learning about our faith and were okay with him hearing this story. However, apparantly another kid in class shared with Evan his own version of the story. On Thur. night I was getting ready to give him his breathing treatment and he turns with tears in his eyes - I immediately asked him what was wrong and he began to sob and said, "Mommy, I need to tell you and Daddy something." The next few moments I heard some very disturbing things come from my little 4 yr. old. Eric and I could barely keep it together and Evan was just a mess. My poor baby had been worrying for over 24 hrs. that he was going to die on Sunday - he put himself in the story, or the kid that told him his version of the story told him it was them and not Jesus. We spent over 30 minutes explaining things that I really thought I would have many years before I got questions like he had. He still has asked questions daily to reassure himself. I can't believe how much of a deep thinker I have - and also how innocent and precious and trusting these little ones are. Pray for us to protect his innocent little mind to not worry about things we cannot control and to convince him that the time we are given here is not meant to spend worrying but living!

1st visit to the Dentist

Evan had his 1st Dentist appointment yesterday and I was so proud of him. He did so good and let the assistant do all she needed to do without a fuss. The office is also mine and I was very impressed with the way they made him feel comfortable and not scared. The Dentist did say that his top back tooth had a very small spot that he would like to see again in 3 months and they might have to fill it - ARGH! We brush his teeth every morning and every night - who knows! Check out his pics!

Also... keep us in your prayers - Bardstown is no longer going to be "My Old Kentucky Home"! As long as things go as planned we are moving in 4 weeks!

Snow, Snow, Snow!

The heading is for my brother, we LOVE the musical, White Christmas! Everytime there is even a forcast of snow we begin singing our song, LOL.

There has been lots of forecast of snow lately. Only to bring disappointment for the icy slush we end up with. BUT... we woke up today with about 9" of snow, snow, snow!

This is the first REAL snow since the year Evan was born. Within an hour after we woke up he had waited long enough and we were sledding down our *little* hill - it was big enough for him though, he would hit his brakes almost as soon as he got going. Fun times! Check out their fort and Frosty!

Evan's 1st Field Trip

I can't believe it.... Evan had his first field trip yesterday! I was so excited to have the day off so I could share this first with him. I think he was way more excited about riding on a REAL school bus than the actual field trip to the Fun Dome, which is also where we had his birthday party. All the 3 yr. old classes got to go so, in all there was about 27 kiddos. While at the Dome 2 of those kids started feeling bad and having flu symptoms so, we are crossing our fingers that Evan doesn't come down with it. Wouldn't you know that those 2 kids are in Evan's class! Funny things that happened - 1.) Evan crawled up the toddler steps to the tubes and got scared... he was up about 5 levels and was crying - refusing to come down the leveled steps or the slide, saying kids said the slide hurt their butts. I sent his BFF at school after him and he came back and said no, he is stuck. So.... me... this plus size Mama crawled up 4 levels and reached my arms up and he would NOT let go and come to me... I had 2 choices push him down the slide or pull him by his legs to me, I opted for the later which he screamed bloody murder until we got to the bottom. I forbid him to go near the toddler area again. 2.) Evan did NOT want me to help other kids, NO THAT'S MY MOMMY!!! We had talks about sharing but, he told me I was him Mommy and there for him and him alone, LOL. 3.) Apparently on the back side of a slide a little boy pulled Evan's ear (I could not see this) Evan came down the slide in tears with a very red ear. I told him it looked okay and to stay away from this certain little boy if he was not playing nicely. Evan's friend Blake came down next and Evan pointed to the little boy and said, "Blake, that is the one who pulled my ear." Blake reached his hand out and Evan took it and off they went to the next jumpy to get this little boy. The teacher saw this and said, "uhoh - they are going to get him, Evan and Blake stick up for each other." I got to the jumpy just in time, LOL.

When Evan tells stories or is upset and wants to use numbers the way I did above, he always skips 1st, and says 2nd of all this happened... and then 3rd of all... LOL.

This pic is of Evan on the bus.

I only do it once a week

We talked to Kayla's Nanny, my sil, last night and she had 2 Feberal seizures (fever seizures) caused by high sudden spike in fever. The Dr. said she will outgrow them and they can rule out all other types of seizures and neurological problems. So, although it is something they will have to watch and they have medicine to give her to stop them if she has another one, it sounded like the Dr. was confident that she will outgrow this and that there will not be any other side effect problems.

Evan has been a real funny one lately - telling jokes and making comments - he thinks they are hilarious and sometimes they are (and sometimes they aren't.) I picked him up from school the other day and one of the helpers said she took Evan to the potty and he needed to poo-poo. She asked if he needed help, which he replied no. She waited outside the bathroom for him and when he was done he came out with his jeans still fastened and pulled down to his knees. She told him that it is a LOT easier to undo them and that she would help him next time and then they would fasten them back when he was done. Evan told her, "It's not worth it, I only do this once a week."

Prayers for Kayla

My little neice Kayla is at Kosairs today having an EEG done because of the recent seizures she has endured. Kayla we are praying for you today and Evan says your in the "hero club" now too! Hoping that your day went smoothly and that you felt our prayers and they calmed you (Mommy, Papaw and Nanny too!) Can't wait to hear that your home and maybe even want to talk on the phone. Although Evan doesn't talk long, does he? See below pic of Kayla and Evan on their camping trip this past summer.

CHD Awareness Day

Somewhere...someplace... today...
A family is waiting to hear...
Is something wrong with their baby?
The answers aren't quite clear...
This family has entered an unwanted world...
And they just don't know what to expect...
Somewhere...someplace... today...
They first heard the words: heart defect.
And how they hoped this was not true...
And thought... this cannot be...
I too... know just how this feels...
For one day...this was me.
Somewhere...someplace...today...
A man and a woman embrace...
Their baby is in surgery...
They long to see her face...
They haven't got to hold her yet...
Without...a cord or line...
They pace the room awaiting news...
And hope she'll be just fine.
Prayers fill this busy waiting room...
And mom and dad are scared...
Somewhere...someplace..today...
The tiniest hearts are repaired.
Somewhere...someplace...today...
A child's growing fast...
Smiling,laughing,thriving...
His mom thinks...can this last?
It's almost easy...to forget...
That anything is wrong...
Somewhere...someplace..today...
Her child seems so strong.
Somewhere...someplace... today...
A little boy fights...just to live
A father holds his tiny hand...
His love...all he can give...
The doctor's are all baffled...
They fear that he might die...
Somewhere...someplace...today...
A family says goodbye...
Somewhere...someplace...each year..
More than 40,000 families will see...
What it means...when something's wrong...
They'll face a CHD.
Today...for just a moment...
Stop...remember...reflect...
Make time to tell someone you know...
"I've been changed by a heart defect".


Author - Stephanie Husted

Putt Putt Pro's

After everyone else had left these 3 bud's played Putt Putt till way after bedtime! They had a blast!

Party Time

Notice Evan sitting between the "older" girls. These two are his friend Robert's sisters whom Evan requested they also attend his party. Kristin & Olivia, I think Evan loves you two!

Evan getting his bike from Mommy & Daddy

My Baby is 4!!!

I can't believe it, my baby is 4! We have still been battling sickness and I was afraid that we would have to cancel his birthday celebration. After 5 visits to the Dr. in 3 weeks, I think we are finally on the mend. Evan started running another high fever this Wed. night, his actual birthday so off we went to the pedi. again Thur. morning. After 2 blood tests and a flu and strep test they determined after all of that came back normal that he had a sinus infection. We are now on the breathing treatments twice a day (Pulmicort & Albuterol), a allergy medicine (Singular) and an antibiotic (Augmentin). We also spoke with his cardio. due to this 3 weeks of sickness and after reading what the pedi. sent him and read all the test he felt Evan was in good hands and not in harm heart wise. I was a little worried b/c our fellow Brave Heart member Andre' who needs our prayers is still in ICU here at Kosair and his stay seemed to start with a lot of the same issues as Evan - breathing, high fever. By dinner on Thur. Evan's fever broke and you could tell he was feeling much, much better. On Fri. by lunch he was so excited about his party at the Fun Dome he could hardly contain himself. Enjoy the pic's - we had an amazing time celebrating our little man, with such wonderful friends - Thanks to all that came!

Steroids

Well, at Evan's check up last Fri. they still heard wheezing so they increased his breathing treatments to 4 times a day (2 times pulmicort, 4 times albuterol) and added a liquid steroid to it. We are going back today for another check to see if we can cut any of this back or out. My little boy has been such a handful the past few weeks. I'm blaming the steroids but, whew. He gets very aggervated very easily and has had so many tantrams and lots and lots of whining. I really hope once he is over all of this that his temper will return to regular Evan temperment. Also, Evan has been potty trained for almost 2 years and I can't remember him ever, even in the beginning having accidents but since the steroids started on Sat. he has wet the bed twice and had one accident. Pray that we get a good report today. One of our fellow Brave Hearts has RSV and is in ICU here so, please say a prayer for Andre'.
Our house has had 12 showings now and one family came yesterday to see it for a second time. We are praying that all of this happen's in God's timing and that he will lead us when it is time.

RAD

No, I'm not trying to go back to my childhood and be cool - that is what Evan was diagnosed with Monday. On Sun. during naptime Evan started having this croupy cough and I thought, uhoh, here we go, he has croup again. Sunday night he started running a fever and the cough got worse so, I called in Mon. and took him to the Dr. She said he sounded very squeaky and gave him a breathing treatment (pulmicort and albuterol) which afterwards he sounded better. We were told to do 3 treatments a day and come back Fri. to see how things are going. Evan doesn't much like the treatments but, thought he sounded a bit like Darth Vader and kept telling me, "Luke, I am your fader." This kid is growing up and fast, he LOVES Star Wars, his Daddy is so proud, his Mama well, most of the time I have no idea what he is talking about. They said that Reactive Airway Disease is seen w/ heart kids (Becky, doesn't Miles have this?). He has a virus where the only symptom is a high fever that comes down with Tylenol but returns to 102.5 as soon as it wears off. I don't believe he has ever had a fever this high. He does good during the day but, has a hard time sleeping - seemed to be talking out of his head last night. I feel so bad when he is coughing his head off, I have enjoyed lots and lots of snuggles the past 3 days though. Say a prayer for my little guy.
ADD: during our snuggle time we have watched a lot more TV than usual and with this Evan has picked up on 2 things.
1) Evan said he had a new favorite song which he began to sing, "Nationwide is on your side."
2) He started telling me that all citizens need Life Alert. I always start laughing and he is so serious, he said, "Mommy, I'm not kidding if you fall and you are on fire you need life alert, it said all sitzens (he has no idea) need life alert."

Update

It is through tears as I type that Maddie passed away yesterday. Her parents last sentence on her site states "There is joy somewhere in all of this, but I cannot see it yet. I am praying for that clarity." I will pray that Maddie's family finds the peace and clarity they are searching for. There is nothing more I can say - I cannot find the words.
Hug your children today.

Prayer

We had a busy weekend - spent it cleaning and looking at prospect new homes. If we get a contract I think we narrowed our choices down to 3.
In response to my own post - I don't always understand why things happen or why I have such a nervous & controlling personality but, I do know that I believe in GOD. I might have a hard time turning things over but, I know that things go much better when I do. I know that if a contract is not put on our house this weekend it is because the house we need to buy is not ready or there are reasons for us to stay in our house for a while. I'm stubborn but, I believe!
Because I believe, I'm asking for all of you to pray! Pray for our dear heart friend Maddie. Pray, pray and pray.

Mixed Feelings Today

I'm feeling a bit frazzled today. My feelings have ranged from sad to happy to nervous and anxious. I read all the blogs on my blog list daily - it seems to have become a routine when I arrive at work. I login to my computer, go to Evan's blog and then go down the list to check and see how everyone is - Krystal I've also gotten use to checking a few on your adoption list too (some of those families really amaze me.) Yesterday morning and again today I check on Maddie and my heart is saddened. I don't understand. I don't know how they do it. I also check on Sammy (hope this is okay) and read his Mommy's last post about God and prayer and I wonder too. I'm a Christian - I believe in God - but why? I know God has a plan and although I would never have chosen my child to be born with a CHD I've been changed by it, and some of those changes are good. I've met people through blog land and my real life that I would have never known and I value those friendships so much. But, wouldn't life have been good if Evan would have been born without a CHD - wouldn't I still been changed for the better for just being a Mommy and met new people that I cherished? I guess I'm just feeling confused b/c of Maddie and her parent's awesome faith. They amaze me. I want that faith and I often blame my control/OCD disorder for the reason I have such a hard time with it but, I do believe, I just have the hard time understanding these types of things and being okay with it.

ALSO our house has been on the market since Sept. and we have had many showings but no contracts. We are having more showings this weekend and I was informed that one family is moving to our town b/c of work and is only looking at 2 houses and is planning on signing a contract on one of them. AHHHH!!!! That means there is a 50% chance my house will sell this weekend and we have not found a new one yet. I know, I want to move. Do others have a hard time thinking of moving on from the home that their child was brought home to from birth and then from his surgery, etc. I'm crazy. I really want to move but, these thoughts have sent me to tears all day. I pray that I can have enough faith that what is meant to happen for my family will happen and that we will be led to the right place to call home.

See below pic of Evan and a very well behaved female Doberman Pincher AKA Gal, that showed up at Mamaw and Papaw's Mon. - so far no owner response to flyers - no tags so, Papaw is taking her to the vet to check for a chip to identify her. If not, I think Mamaw & Papaw might have a doggy - look how in Love Evan is with her.

A Very Excited Christmas

Evan was so much fun Christmas morning! I didn't expect him not to be but, WOW, he was sooo excited. He woke up at 5:20 and came to our room and asked if he could get up and I said no, not yet, lay back down. Less than a minute later the light in the hall flips on and who is it you ask, my 43 yr. old brother. He poked his head in our room and said, "can we get up?" Of course Evan chimed in, can we, can we? I told Evan he had to go potty so Eric would have a chance to get the camera and Evan kept yelling while he was in there, "Munc, did Santa come, did he?" It was so cute! Munc (Evan's nickname for my brother, Uncle Michael) has spent Christmas with us the last few years so he can share in the excitement a little one brings and we love having him with us. I think next year there will be rules though - Munc can NOT wake up before at least 6:30. He always use to wake me up, I'm sure I should not expect anything but an early rise.

Update on my last post is that my lab work came back and I'm not anemic - actually my B12 levels are unusually high - normal 200-900, mine - 2000. Hmmm..... They are sending me to a neurologist to see if he has an idea why my feet are still numb. I'm doing fine though, it is just a bit aggervating. Also, Eric fell from a ladder at work yesterday and is quite sore - I joked with him that we will be hobbling into the new year!!! LOL.

The first two pic's of Evan right after he saw what Santa brought him - He loves his new race track and his Planet Heroes.

The second is of Evan opening his tackle box from Daddy. Eric LOVES to fish and is too excited that Evan also enjoyed doing this with him the past summer and that Evan had tackle box on his Christmas list.

By the time we got to my Mom's he was a pro and opened all of his presents before we had gotten our tissue out of our first bag. LOL.

Me & Christmas

Sorry for no photo last Friday, our visit with Santa didn't go so well. Evan did great, he was so excited, it was Santa, can you believe it? The little kid in front of us got down and left so it was Evan's turn and I nudged him and said okay, it's your turn buddy and he walked right up to get on Santa's lap and Santa put his hand out and said, "You'll have to wait, they are not ready to take your picture yet." HUH??? My response - "We are not here to get a picture we are here to see Santa." Santa then looked down at Evan and Evan began telling him that he had been good and that he was sorry for when he had been bad and then his list of requests. Santa never said anything, never attempted to pick Evan up or anything. I was so disappointed. We are going to a Christmas party tomorrow and my Papaw is going to show up in a Santa suit so hopefully he'll be nice ; ) of course Evan didn't notice that Santa was less than Mommy expected.
Now for the title of the post. Something with me & Christmas is off. It started back in my Jr. yr. of HS when on Christmas Eve I started having horrible pain in my bottom. By Christmas day I was unable to sit down. I made it through and my parents took me to immediate care early the day after Christmas where I was rushed into immediate surgery for a polinidle cyst. Then the Christmas Evan was born we had a huge ice storm that shut down the town that Eric & I live in just outside of Louisville. We left Evan at my parents and drove the long and slow drive home to get our Christmas presents and check on the house. On the way back I began having a headache and wrote it off to driving so long in an ice storm. By Christmas morning I knew something was wrong, I was having such a hard time focusing and the room seemed to be slightly moving. The symptoms kept intensifying until I went to the Dr. a few days later and was diagnosed with Virtigo. I was out of commission as far as driving or being alone with Evan and put on disability for 2 months at which time it went away. Now this Christmas. On Monday after arriving at work I kept complaining about how cold it was. My feet felt like they were freezing - like in an ice bucket. When I got home I couldn't wait to take my socks and shoes off and wrap them in a heated blanket. When I got my shoes off I realized that to the touch my feet felt warm but my feet also didn't feel the touch. Yep, my feet have been numb/asleep since Monday! I went to the Dr. today and was told that looking back on my records I have always been borderline anemic - well not anymore - I crossed the line. They gave me a big B12 shot and took lots of blood work and warned me that the shot could be a weekly thing. They said some people get feeling back immediately after their B12 shot - so far I haven't. After telling my folks I found out I have 2 Aunts and 1 Cousins w/ pernicious anemia and that is hereditary. Good Grief.

FFF - Evan's visit with Santa

With Eric working so many hours it became a habit this summer to snuggle in my bed with Evan and read books and we always ended up falling asleep. Eric would move Evan into his bed whenever he got home. When things started to slow down a bit for Eric and he was home at bedtime he started going to Evan's room and reading to him but, he always fell asleep before Evan and ended up sleeping most of the night with him. Mind you, that before Eric's change in schedule this summer Evan has been happily sleeping in his own bed alone with no trouble. When Eric wakes up sometime around 2 or 3am he gets up and comes to our bed and in no time we hear Evan's little feet coming down the hall to our room. We have spent many many nights lately with the 3 of us snuggled side by side. My back has been hurting so badly that I told Eric we really need to try to get him sleeping again in his bed and the last two night he has, all night!
This Morning I told Evan that after lunch I would take him to see Santa. A few minutes later Evan said "Mommy, you be Santa"
M - "Okay, I'm Santa"
E - "Santa, do you remember me, it's Evan"
M - "of course I remember you"
E - "I slept in my bed the whole night last night"
M - "good for you, maybe there will be an extra gift in your stocking"
E - "Thanks for forgiving me when I'm bad too"
This followed with his gift request. I was cracking up. I'll post a picture of him with Santa tonight for FFF.

It's the Holiday Season

Last night was so precious! Evan had his very first Christmas play at his preschool - they were so cute. His class sang 4 songs - Away in a Manger, Go Tell it on the Mountain, Open the eyes of my Heart Lord and We Wish you a Merry Christmas. Evan had proclaimed that he would NOT be doing any motions but, he surprised us and did them all. I'll be uploading pictures tonight so, you will be seeing for yourself that my little man was so cute last night! I'm so excited to be given the gift of this child and sharing in these moments with him.
Our little Sarah has been released from the hospital and is resting at home - well somewhat - has her days and nights completely mixed up her Mama says.
Maddie still needs our prayers. Her parents said that she is a candidate for transplant now and that when asked the Dr.'s said the best time for Maddie to receive a heart is today. Please pray.

The first picture is of Evan and one of his Brave Heart friends that he also gets to go to school with, Caleb.

The Second picture is of Evan and he new school friend, Blake. You remember me posting earlier that Evan had a very rough first few weeks of school. Another Mom whose son is in Evan's class and whom I also work with but did not really know became such a God send to us during this. I was able to get to know this sweet lady and her adorable little Blake and they agreed to wait for us every morning in the parking lot and let Evan & Blake walk in together. This did just the trick and made Evan feel much better about school. Thank you Lisa & Blake!!!

Urgent Prayer

I know I promised an update from my big 3-0 birthday getaway but, that will have to wait as I'm coming to you with more important things.
Please pray for Maddie she is once again on ECMO after a major turnaround from almost being discharged to go home Thanksgiving. Please Lord help Maddie's lungs to be free of the casts and not return - help her Fontan circuit to not be the cause of these problems.
Our youngest Brave Heart member - Sarah, is 5 months old and will be undergoing her 2nd OHS for HLHS tomorrow. She had a cath. today to get things ready and as far as I know it is a go.

Thanksgiving & makeup FFF

I've meant to post several times lately but life just seems to keep me so busy! I got a night out alone with some of my girlfriends last Friday to celebrate my 30th B-day at The Melting Pot . I had so much fun and laughed so hard.... we definately need a few more nights out like that a year!!! To all of you that made it I Love You and thank you for keeping me sane and making me smile. To those of you who didn't - pblthhh.... ; P ahahahahaha.... My family gave me a little party on Saturday and I went to the Ceasar's Casino for the first time (probably the last) several people I know love to go but, that just isn't my thing. Eric is taking me away this weekend just the two of us, he has planned everything himself and I can't wait and I'm surprised I haven't A.) figured it out yet or B.) Eric hasn't slipped and told me yet. He told me today that it was a Holiday Inn with a view of White Castles - he thinks he is so funny. I'll have to update next week and let you all know.

Tomorrow is Thanksgiving and I'm so thankful for all he blessings in my life. I pray that all of you have a wonderful day.

I wanted to share (before I forget - gosh I'm just 30 but my mind is shot) with all of you some of the sayings Evan has been saying. He makes me laugh so hard sometimes - it really makes discipline hard ; )

In the middle of ALL adult conversations - Essuze me please - I'm trying to talk (and then he has to think of something to say)

Mommy are you zhausted (exhausted)

I've got an idea - usually followed by something really fun for Evan and not so much fun for us

Me - Evan did you have a good day at school

Evan - I didn't get time out but, I'm sure glad this day is over!!!

Me - what did you do?

Evan - played : ))))

He was at my parents the other day and he asked my dad this "Papaw, we can go hunting, fishing or climb the apple tree, it's your decision Papaw, you can think about it." Papaw didn't want to do anything and was quiet a while when Evan said, "Papaw are you still thinking about it, what is your decision."

He can be such a smarty and asked me the other day on the way to time out if I wanted time out - his time was doubled. He can't help himself. He knows when he is in trouble and should shut his little mouth but, he is my child and he just HAS to add something on his way out.

See below promised pic of Evan's chin which is all better now. Also a few pictures from Evan's last swimming lesson at the local Y - his teacher said he was doing so well he could go down the big kids slide - he LOVED it! Lastly a pic of Evan and his bud Lucas watching Frosty the Snowman today as Mommy has been off all week and we've enjoyed lots of play dates with our friends.

FFF & Cardio checkup

We had a cardio checkup yesterday, it has been six months since our last one and Evan had asked several times when we were going to see his Dr. McOmber! We are so blessed to have such a wonderful and caring cardio to care for our Evan, he feels so special there with him & his nurses. There is nothing we value more than feeling comfortable and at peace knowing that your childs doctor is without a doubt looking at your child as a person, not another patient. The nurses there even walk with our heartwalk team every year - they are wonderful. So.... Dr. says that Evan is looking great - he did a great echo and explained to Evan what he was looking at and answered all his "why?" questions. He said that we will do another Ventilation Profusion Scan and 24 hr. holter in March which will be 1 year since the last scan. We will continue to do this every year to keep an eye on the left PA that was stented Apr. 06 - eventually they say he will need a valve and conduit to replace his current valve and left PA so we are just going to keep a good watch and put it off as long as possible. We also were able to discontinue Digoxin for the time being so, Evan will be med free for a while. We thought the night was just going wonderful then, at bathtime Evan fell getting out of the tub and gashed his chin open - I about died when Eric came running out of the bathroom with him. We ran to the immediate care which was to close in 10 minutes and they were able to glue it shut with steri strips and avoid stiches. This weeks FFF is of Evan and his beloved Dr. McOmber. Next weeks will be of Evan and his steri strips - oiy - this boy keeps me on my toes!