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!

Evan's Mendaversary & Hubby's Birthday (FFF)

Today is Evan's 3rd "mend"aversary since his open heart surgery. I always try to spend some time this day with him doing something he really wants to do and we also usually deliver goodies and cards to his cardiologist. Its hard to put into words the way I feel each year as this day passes - the sadness of remembering what he went through - the gratefulness that he came through it - the anxiety of wondering when/if he will have to go through it again - thankfulness for the time God has given us together - thankful for the Doctors and Nurses that have and continue to care for him. So many different emotions. The favorite pictures today are of him after his first cardiologist appointment and one I had made a few weeks ago.


























Today is also hubby's 34th birthday. I think I've told this before but, I'll tell it again. Gearing up for Evan's surgery - being the OCD person I am, I had to plan. There were so many things out of my control so I went a little overboard on the things I could control - cleaning, packing, sorting, doing things a certain time, perfection. I also was engulfed with the need for knowledge about what was going on searched and asked questions to anyone and everyone I thought could help - I also probably drove his doctors crazy and had given my cell phone as the contact number for all the doctors. I was sitting at work one Wednesday afternoon and my cell rang and it was the head nurse from the cardiologist saying that the surgeon was going on a 2 week vacation and that he had a cancellation and could fit Evan in before he left in TWO DAYS - that Friday morning. I just started crying and crying and couldn't stop - what was this lady thinking calling a person that was preparing for this surgery and telling them they could do it in 2 days - all I kept saying to her was no, no we can't - I need to wash his favorite clothes and get his favorite toys together and clean my house and.... She said it's okay - I just wanted you to have the option we can schedule it when he gets back. I hung up and left work - ran to get Evan and just held him wondering how I would ever prepare for this. The nurse got smart and changed the contact number to Eric's cell phone and when they called to reschedule they called him. So, Eric called me and said well, we have a surgery date... I ran through the list... Is it on Tuesday or Wednesday so we will be at the hospital during the week and have the best care, is he first case, can this nurse be here that day, did you ask these questions..... He calmly said, yes yes yes to all the questions and said okay, do you want to hear it (pause) It's October 26th. WHAT?!?!?!? That's your birthday!!!! To which he replied, It's okay, it will be the best birthday present ever. And it was.

Church

Have I said that I love Fall? Well, I'm sure I have but, where is it. We have a few good days and then today - high of 83?? My little country boy - I'm definately a city girl - my husband is a country boy - Evan - he woke up at 8:00 and in his cutest Bluegrass accent said, "Daddy, lets go get some crickets and wax worms and go fishing - Mommy, I'm going to bring you home some good fish." Um, who is going to cook this fish??? So here I am with a morning to myself and I feel lost. Usually we would be in church but to be honest here we are having a really hard time with that. I have been a member of the same church my entire life - I met Eric there 10 years ago - married there 7 years ago - lots of memories. About 7 years ago a lot of changes happened and I really believed that those things that began to bother me would pass and I should continue to hang in there. Evan was born and under the direction of his Dr. we steered clear of church and places there would be lots of kids. Evan had his surgery at 9 months old and we had probably only been to church 5 times - so weird for people who were in church 3 times a week and also attended local seminary. During our quarantine we were hurt by the lack of support and then after surgery we returned and felt so out of place. I loved Evan's Sunday School class and it was so good for him so we continued to go for that reason. Now, we never go.... I need to be uplifted but how??? I'm not feeling it at my lifelong membership church - so I guess I need to go elsewhere. Our house is on the market and I keep saying we are going to go back after we move so we can find somewhere close to our new home but, things are moving slowly so that could be a while. Have I just become really picky? Is it me - my attitude that I'm not feeling it? I want a place where people can be real, no pretending. That I feel shouldn't be so hard to find. I'm thinking the search better begin soon.

I missed Favorite Foto Friday but, here they are, We had boo at the zoo this week and I think I mentioned in the last post that Evan wanted to be a skeleton and we found one we like at Pottery Barn but it was $50 - check the link - how did I do? I made it for $12.

http://www.potterybarnkids.com/content/features/halloween/stylehouse.cfm?cm_src=bil_spookyhalloween_f3v2&cm_type_type=flash

Fall is here! Favorite Foto Friday

I'm so happy that finally it feels like fall here in the Ohio valley. We are packing the first fall like weather weekend full. Evan begins swimming lessons at the local YMCA with his buddies Sat. morning and then our town is having its annual Arts and Crafts festival. Sunday we are going to Huber's Orchard and Winery -http://www.huberwinery.com/content_display.php?id=1 - with some friends to get pumpkins and sip cider. Sunday night we are going to Boo at the Zoo and Evan is soooo excited. I fell in love with the skeleton costume at Pottery Barn but it was $49.99 and well, I just would not pay that so, I made it for $11.00! It turned out so good - I'll post those pic's next Friday.

Our house hasn't sold yet but, there have been a few showings so, at least we have started the process. I'm really praying that things work out to where I'll be in a new home in time to celebrate my 30th birthday - if so everyone is invited for margaritas!!!

Evan is LOVING school - I'm so glad he adjusted to this. This week was Fire Prevention week and the local fire dept. came and gave them safety tips and let them get on the truck and gave them hats. Evan has been schooling us all week on what we should do if there is a fire - he's so cute. He also recognized his name in a group of names and wrote it for the first time this week.

Continue to pray for Maddie - she is really looking better and better.

Our little Brave Heart Sarah was admitted to the hospital last Sat. w/ low sats but, they improved and are still looking at surgery before Christmas.

Hope everyone is enjoying Fall!

Favorite Foto Friday

I'm going back to some oldies for my favorite pic's today.

This was taken while napping - he was only a few weeks old. What I would give for him to be this small again. I'm so thankful for everything God has brought him through and I wish I would have relied on my faith more when Evan was this small!
























Evan's favorite time was bath time and pre-repair he would turn so blue and get so cold and it didn't help that his little bathtub was blue so we were constantly saying "is he okay, is it just me, check his nailbeds" - oh I should have just enjoyed that little face instead of worrying so much!





















This is true Evan style - I was getting ready to leave him at my Mom's while I worked and this was his favorite position in his highchair!

Maddie is still having a very hard time - please keep praying for her and her family.
Our Brave Heart Logan was re-admitted because his chest tube came out but, x-ray showed it wasn't needed and he went right back home!
Also, if you read my blog but not Brayden's please visit there as his family is requesting signatures on this amendment to help bring their boy's home from Guatamala.
http://www.petitiononline.com/foafoa1/petition.html