Good News

Just got home from our appt. with Evan's cardio, Dr. McOmber. He said that everything looked great on all reports (EKG, echo and listening)! He also told us that because Evan's heart looks so good that we can quit the Digoxin and Aspirin - don't know quite what to think about this yet as we have been on both for so long, especially the Digoxin - since Evan's surgery 2 years ago he has been on the Digoxin all but one month (they quit the Dig. at one year post op and then our very next appt. is when that pesky pulmonary artery showed narrowness so they put him back on it.) I did mention the out of breath and Dr. McOmber said that again, Evan's heart looked wonderful and that he would mention it to the pedi. just in case it had to do with possible allergies/asthma. They did send him home with his yearly holter - fun, fun. He said we had to get at least six hours of recording to not have to do it again so I'm praying that he will leave it alone at least until morning! Enjoy the pic's from our Huber's Orchard trip and some pic's of Evan and his beloved cardio, Dr. McOmber.

Cardio Appt. this Thur.

I've been busy the past few day's with Eric gone, trying to keep Evan entertained when he is bored of me and wants his daddy! I took the day off yesterday and took him to Huber's Orchard and we did all kinds of fun stuff even though it was crazy cold up there. I'll update pic's from that when I get home tonight. It was kinda sad, Evan wanted to throw a penny into the wishing well and wished for his daddy to come home. He is so not use to not seeing both of us everyday and Eric has been gone since last Fri. I'm so thankful my mom has stayed with us and kept us company! I'm sure she's ready to be rid of us!!! A fellow heart friend had his 3rd b-day party last Sun. and Evan had a blast, they had the Tumblebus come and stay for an hour - (Tumblebus is a school bus that has been gutted and has a springy floor, slide, trampoline, monkey bars and just lots of fun stuff inside) - Happy Birthday Lucas!!! Evan has a cardio. appt. this Thur. and I'm anxious to see how things are going - things on the outside appear to be going great other than some out of breath moments when he is really playing hard ~ any other heart parents kids have this symptom - Evan has always gotten out of breath when he is really jumping and running around and they have said before that he might have asthma but I've also heard that is a sign of the pulmonary artery narrowing (which was stented last April) and not enough blood going to the lungs and that this could be serious so I'm definately going to bring it up at his cardio appt. They had said that he might come off of Digioxin and aspirin if things looked good at this appt. so I'm looking at the Dig. bottle this morning and thinking we don't have enough to last until Thur. - might have to buy another bottle even though we might be done with it. It might snow this Thur., I can't believe it! Evan thinks if it snows that it means Santa is coming!!!

Make Believe Friends

Just had to do a quick post and say that Evan came into the office tonight while I was investigating Judge candidates for the election tomorrow and told me that, "OG and OV are in the hall and we need to go talk to them," I asked him who is OG and OV and he said they were his friends and asked if he could call them so I handed him a phone and he said, "Hi OG are you here" then asked me, "Mommy do you see them?" I'm thinking ummmmm..... no and then he asked if he could make a card for them. After coloring a nice card he told me that him and OG were ready for a bath!!! Where is this coming from??? Anyway, just had to make a quick note of this, I've got to go give OG and Evan a bath!!!

Sorry so much silence this past week or so and for no pictures from our celebration for Evan's 2 year post-op. It rained so hard that I thought I was going to have to turn around and go home and ruin my diet by Evan and I eating all those cupcakes myself!!! It was all I could do to grab the container of cupcakes and Evan and run in the doctors office - we still got soaked!! Besides, Evan's beloved cardio - Dr. McOmber was busy with a patient and we weren't even able to see him so we visited with the nurses and then went on to the pedi. to drop their treats off. When I got to the pedi. the nurse said, "Oh, hi I was just getting ready to call you b/c we finally got the flu shot in for Evan's age and weight group - do you want to do it while your here?" I had been waiting for that to arrive and didn't want them to run out and Evan not get it so I agreed. When Evan found out we were staying there for a reason other than delivering treats he was soooo upset. He kept crying and crying and saying, "Mommy you said we were delivering treats - no shots!!!!" I'm sure when all was said and done that everyone at that office was glad to see us go and I was glad to go! It was fun but I could have done without the rain and the flu shot! We have a busy week coming up - Daddy and Papaw leave for their yearly hunting trip this Fri. and will be gone for a week! Mamaw and I will be staying together and enjoying some shopping, Evan willing, and not cooking! I look forward to this time I get to spend with my mom but it always makes me realize how much I depend on Eric, I'm going to miss him. Evan's checkup with the cardio is on the 16th of this month so pray that things are still going well and that he can possibly come off of Aspirin and Digoxin. His little legs are so bruised from jumping around and just playing rough he is all boy, he bruises so easily!

2 year Post-op Anniversary Today!!!

I cannot believe it has already been two years ago today that we handed our little Braveheart over to Dr. Austin for repair for Tetralogy of Fallot. Last night I was thinking back to the night before and how we took pictures of Evan all day long and told him he was going on a mended heart trip. I remember when we left pre-op that day that we let him have ice-cream and took pictures with his pumpkin in his costume since we would be in the hospital for Halloween. I remember rocking him to sleep and singing to him and once he had fallen to sleep rocking him and praying to God to please protect him and to let the surgery be a success and to protect the surgeon and Eric coming in and telling me to lay him down and us both sobbing once leaving his room at what tomorrow would hold. Worrying that he would wake up after midnight and want a bottle and what in the world we would do. Thankfully he slept that night. I remember trying real hard to be strong walking into the hospital that morning and looking around the waiting room and wondering if everyone else was as scared as we were. Things went fast after we went back and they anesthesiologist came and said we'll be ready in just a few minutes and all I wanted to do was run with my baby. They came and I thought I would collapse watching them walk away with him. Heart families also have their own waiting room so we went there where friends and family were waiting for us and we waited. The first update I will never forget, the nurse came in and told us that Dr. Austin had rocked Evan to sleep, that meant so much to us to know he was being cared for in such a compassionate way. We held our breath for the hourly updates from our nurse and when they came with news we prayed and then began the wait again. Seeing him for the first time after surgery was scary. I looked beyond the wires and tubes and saw my little baby and began to sing our song that we always sang to the tune of "Que Sara, Sara", "When I was just a little boy, I asked my mommy what will I be, will I be handsome, will I be bright and here is what she said to me, Hey Evan, Evan, whatever will be will be, the future's not our's to see, Evan, Evan what will be will be." The next few days were rough and I became addicted to the monitors and drove the PICU crazy and then just six days later we were headed home.

Eric and I watched the HBO film, "Something the Lord Made" last night and after the movie was over I just kept thinking, "Wow, we have those two men who innovated heart surgery that our little braveheart is alive today." Great movie and I highly recommend you heart families out there to get it. Tomorrow I have the day off and Evan and I are delivering muffins and cupcakes to the Doctors that are over Evan's care. Evan is excited to see Dr. McOmber, his beloved cardio.

Today is an important day for another reason, It is Eric's 33rd Birthday!!! When they called 2 years ago and told us the date I just looked at Eric like ??? and he instantly said, "This will be the best birthday present ever!" That is him, my unselfish husband that thinks of Evan and I before himself always. So tonight we are celebrating with his favorite dish and cake and then tomorrow night with his extended family. Happy 33rd Birthday Eric, we love you!

Pic's from Boo at the Zoo

Finally uploaded some pictures from our Boo at the Zoo trip last Sunday. We DID NOT go to Waverly after trick or treating!!! Not only am I a chicken but I also see no need to go somewhere where I know all that will happen is that I will scared to death and cause myself to have nightmares. I just decided that there was no point in putting or opening myself to that scariness to just say, "I toured Waverly" and although everyone else still wanted to go their dreams got shattered when they called and they told them they were sold out for tours until next year!!! I've been pretty emotional this past week, no I'm not pregnant, just thinking about what was happening 2 years ago at this time. Evan will be 2 yr. post-op this Thur., Oct. 26th. We carved pumpkins tonight, Evan wanted one big one and one little one and on the way home he told the little one, "Don't be scared, we are going to take good care of you!" He asked if we could keep the little one inside so we just painted it, much fun! We are planning a very special day this Friday to celebrate! Be sure to look for some cute pic's this Friday!

Croup

Evan has not been feeling well. Woke up last Sat. night coughing and couldn't stop. We took him into the bathroom with the shower running on full hot to try to help things, it really sounded like his airway was shutting off and I was debating on a trip to the ER. He could not lay down, even reclined, if he was on his back in any way he was coughing. I ended up sleeping from about 3:00am, holding him in his bed leaned up against the wall, hard to do now that he is 37 lbs. I tried to take him to the recliner but he cried (which made the coughing worse) wanting to stay in his room. We made it to morning like that and I called our emergency # at the pedi. office and they opened to see him. It was croup and they put him on a 3 day steroid and Benedryl. Poor little guy, he really had me worried. Sat. night my mind was spinning thinking about how this is the first year since his birth that we haven't had RSV shots during these months and then the what if's and what should I do's started. I was so thankful for our pedi. office opening up Sun. morning to see him! He is doing better, still a little cough but lots better. We have our local Arts & Crafts fair this weekend so I believe my DH is going to keep Evan and let my mom and I have some fun shopping so I'm really looking forward to that. The zoo here is opening at nights on the weekend for Boo at the Zoo where you can dress up and go trick or treating there. We had planned on doing that this Sun. evening with some friends but we will have to see how Evan is doing. He is going to be a T-Rex for Halloween and is so excited about that. We (Eric and I) have been asked to find a baby sitter after the zoo trick or treating and all us adults go to Waverly Hills Sanatorium for a tour. I'm scared to death but Eric thinks it would be really neat to go tour it. For those that aren't familiar it is an old hospital that was built for the tuberculosis epidemic in Louisville in 1926 you can read some about it here; http://www.prairieghosts.com/waverly_tb.html. I haven't made up my mind as to if I'm going but if I do I'll have lots to write on Monday because I'm already terrified just thinking about it. Have a great weekend!

Team Bravehearts 2006 #1 Friends and Family Team

What an awesome day we had this past Saturday down on the river for the 2006 Kentuckiana American Heart Association Heart Walk. I would say we had about 50 people wearing our Team Brave Heart's t-shirts, representing 7 different families whose children have been born with a congenital heart defect. The Courier Journal talked to myself, Lucas' mom and Ben's dad and did a little write up in Sundays paper
http://www.courier-journal.com/apps/pbcs.dll/article?AID=/20061001/NEWS01/310010006&SearchID=73258632327851 although I don't remember saying exactly what she wrote and I'm also not 30 (yet), she asked me how it is having a child with a CHD and I think I said, "You try to live as normal as possible but in the back of your mind their is a constant worry that something might be wrong" and "We are here to raise awareness and funds for congenital heart defects to help other families like ours and hope that they can find out why this happens." It was crazy though and she did a good job. We were also approached by WHAS 11 News and went over what questions were going to be asked and then the reporter said, "Okay, we go live in 15 minutes" and I was like "Ummm, the walk starts in 5 mintues" so she wrote down some stuff, not sure if she talked about it or not but we really wanted to be a part of the team and walk together so we went on. Our team raised over $16,000 and we raised $1825.50 and were awarded the #1 Friends and Family team in Kentuckiana, what an honor! Thanks to everyone that donated! The walk is such a wonderful way for us (Team Bravehearts) to raise awareness and just honor our little ones.

AHA Kentuckiana Heartwalk 2006

All of you that keep up with Evan's blog have been touched by CHD's in some way, either by Evan or your own child so, I wanted to post a link to his donation page for the American Heart Association's Kentuckiana 2006 Heartwalk. This is our 2nd walk and we will be walking again this year with other CHD families under "Team Bravehearts". Our main goal in participating in this walk is to raise awareness of CHD's and funds for much needed research. If anyone would like to donate, his personal donation page link is: http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=147761&supId=136764053 .

The deadline for donations is September 29th.
Thanks!!!

Swish and Spit

Man have things been crazy around here! For starters Evan has had the Ohio Valley allergy yuckies since the golf scramble. The doctor put him on liquid z-pack (sp?) and when we got home that night I started him on his first dose and I got the medicine dispenser in his mouth and squirted and he turned and ran into the living room and began puking up the pinkish/red med all over the carpets. I was also running a temp. and Eric was still at work so I ran him into the bathroom and washed him off and ran back into the living room scrubbing the carpets (3 or 4 times with resolve and the stain in still there). I called the emergency line at the ped. office and told them what happened and they said, try again. I got him out of the tub and tried to give him the med's again and he instantly began puking and gagging. The next morning I called the ped. office and the doctor called me back and said that he thinks from being on the vent. a few times that Evan possible has a texture adversion because he gets sick so often and so easily so they called him in 10 days worth of amoxicillan. Evan has told everyone of my franticness that night, he says "Mommy ran into the bathroom and put me in the tub and said, oh shit my carpets" nothing like a 2 year old telling everyone about your moment of insanity like I cared more about my carpets than him being sick, or so everyone he has talked to thinks. So, a week ago today we finished the last dose of that. Last Tue. morning Evan woke up saying his teeth hurt and when asking him why he said that, "a snake bit him in the mouth while working on the dryer like Handy Manny." I knew that wasn't case so I dismissed it. Tue. night while brushing his teeth he cried and said his teeth hurt and when pulling out the toothbrush there was blood everywhere. Wed. morning I called the ped. office and they said he probably had thrush/yeast infection from being on amoxicillian so long so they called in another med to swish and spit every 4 hours. Do you hear me, SWISH AND SPIT EVERY 4 Hours for a 2 year old?!?! We started this Thursday and it seems to be getting a little better although he still hasn't gotten the hang of swish and spit, I figured squirting the medicine with dispenser across the gums is kinda like swish, right? He instantly spits it out and cries and gags saying, "Yucky medicine mommy." I'm supposed to call again tomorrow if it is not better, we'll see. All the while my house and my parent's house is a complete wreck because we are both having new kitchen floors put in. I don't think I know the meaning of calm or rest, it's all rush and exhausted. The floors are being finished today so hopefully things will calm down a bit but wait, The heartwalk is this Sat.!!! I'll be busy but that will be fun stuff!

2006 Bravehearts Golf Scramble

The Golf Scramble was a complete success! We had a wonderful turnout of 14 teams and everything went smoothly. Everyone loved the video that played throughout the day and signs around with each child from our team's picture and story, made them feel more connected to our families and more aware at what we have gone through. The speech that was given by the AHA rep. and Benjamin's dad Andy got everyone ready for a great day of golfing for this wonderful cause that we feel so passionate about. Once everything got kicked off my brother and I ran the drink cart around and everyone kept telling us what a wonderful time they were having. It started raining just before everyone got to finish and the pro's said everyone had to come it so the winner's were based off of 12 holes. Everyone came in soaking wet but with huge smiles on their faces. After the ending ceremony we had with prizes and giveaways and people were leaving everyone stated they would be back next year with friends, so this will be an annual event. The pro's at the club said they could not believe this was our first scramble! Our total profit for AHA was about $3000.00. I'm so proud of our little team, our community and the friends we have made. The heartwalk is about 2 weeks away and we personally have about $200.00 left to meet our goal but I believe we can do it. Enjoy the pic's from the scramble. Go Team Braveheart

Ohio Valley

What a week this has been. Besides being stressed to the max that the Golf Scramble is THIS SUNDAY, we are sick. I should have known, it happens every year the week after Labor Day. We spent the whole weekend outside at family events and the weather was just beautiful but when the weather changes from burning hot to cool so quickly it causes a lot of allergy and sinus trouble here in the Ohio Valley. I woke up Tue. morning with a sinus headache and congestion and then Evan woke up Wed. with the same. I feel somewhat better after keeping a dose of Tylenol Allergy Sinus in me every 4 hours but last night Evan seemed to be worse. He woke up this morning at 5:00 and never went back to sleep because of the congestion. I have an appt. for him this afternoon so hopefully it is just allergies. Of course this has been on top of trying to get everything ready for Sunday's Golf Scramble, don't get me wrong it is not all my responsibility, there are 5 families participating but, it has still been a lot of work. Evan also has a "bruiserblister" (feverblister) that he hates and wants to remove, it looks much worse now that he has messed with it! I'll update Monday and let everyone know how the scramble went. Please pray for us!
See link to video that will be played at scramble event below:

Team Brave Hearts 2006

Toddler Sayings

Evan has been so cute and so much fun to listen to lately. The other day he told me, "Mommy, my headfore hurts." At first I was like, what?? Then, "OH, your headfore (forehead.)" He had a conversation with my mom yesterday, "Mamaw, I'll be Christopher Robin and you be Rabbit" Mamaw "Okay, where is Tigger?" Evan "He is hiding, he is a really good dancer." He loves to dance and sing, such the entertainer.
We are full of family reunions this weekend. They are all close and we are looking forward to seeing everyone. Evan is definately looking forward to Munc (Uncle Michael) spending the day with us and swinging at our family park on Saturday.
The Golf Scramble is only 10 days away!!! I'm so excited and nervous at the same time. This has been a lot of work but, I believe it is going to be a huge success. We have 6 families participating in the heartwalk and scramble this year with "Team Bravehearts" and as of today, we are the #1 Friends and Family team in Kentuckiana. We are expecting about 17 golf teams at the scramble and have many company sponsors and prizes. We are blessed to live a community that supports us. If all goes well, we plan to make this an annual event. Go Team Bravehearts!!!
Hope this finds everyone well and enjoy your nice long weekend!

Warning... This is about poop!

This past week or two Evan has been so animated about going to the bathroom. He has been potty trained since late May and has always been like his father and I, very private about going #2, always tells us to "go away" and we know what that means and when he is done he will holler for us to come back. This is the way it has always been. Then about a week or so ago Evan has this fascination with it. He still tells you to "go away" but calls you back many times to have you see his progress and if you happen to walk past the bathroom while he is going you will find him bent over staring down in the bowl. The other day when we got home he told me he had to go poop so we got to the bathroom and he said "go away" so I went to the living room to catch the news and this is the converation we had; Evan yells "Mommy, they are popping out, come look" mommy says "Evan, I don't want to see just let me know when your done" "Mommy come look", mommy goes into the bathroom and says "Evan, your doing a good job, let me know when your done" and goes back into the living room and then Evan "Mommy, you've got to come look, there's a family of poops in here." I cracked up, I could not help myself, a family of poops? He does not get this from his father or I, we are both private about what happens in the restroom but, not Evan he wants everyone to know. I have a good friend who has always had a good sense of humor about poop with her little girl and somehow, though we are not related and Evan has only spent a few hours in her company, Evan has gained her sense of humor about it. This post is for you Beth!!!

It's Friday!

Thanks Munc for posting the results for me Wednesday! We are switching internet companies and cancelled the old one before the new one was up and running, oops! Evan did great at the appointment on Wed., he just loves Dr. McOmber and sat there so big. He usually wants Mommy or Daddy to hold him while Dr. McOmber does the echo but, nooo, this time he wanted to sit all by himself! I was expecting better results than we got, had a % in mind that I thought was a good one (65%-right, 35%-left) so when he said oh great, the results were 71%-right and 29%-left, my heart sank. Then he said, "What's wrong, I'm totally happy with that, we doubled the amount of pressure that was going to the left side, that's great." So, he's the doctor and if he is happy with this than so am I. I love Evan's cardio and the entire office, they are just a great group of people and always are so nice and I really appreciate that. They signed up with our team and are walking with us at the heartwalk, they did last year to, see wonderful people. Thanks again for all your support and prayers for last Friday and this Wednesday!

Vent. Scan Results

Evan had his followup for vent scan results today. The results are: pressures to the right are 71%, and pressures to the left 29%. The doctor was very pleased with the results, as the stent has doubled the pressure to the left side. The gradient pressures were 68% on the right, 32% to the left. His heart function was good . They want to do another followup in November. Thanks for all of your prayers.

We are home

We are home and Evan is sleeping. It took 4 sticks this morning to get an IV, up until then Evan had been handling things really well. Because he is on Digoxin they were not able to use the same sleep medicine called Dex which worked really nicely last time but Dex. mixed with Digoxin they said could cause heart failure. They used Versed and Nembutal. They were not able to give him the Nembutal until we got to the nuclear medicine dept. for some reason and there was another baby in there just screaming so Evan fought the med's really hard and that is always upsetting to see. Once they had him to sleep the test only took about 20 min. As soon as Evan woke up they told us to start giving him Coke because Nembutal causes bad headaches and caffiene helps. He was pretty upset that his head was hurting but once we got down the road a ways he calmed down and fell asleep and seems to be resting nicely now. They said the headaches could last all day so, I'm going to rest a bit too, it could be a long night! Thanks for all your prayers, we really appreciate it! Will update when we get the results, could be Wednesday before we get them.

Scan is this Friday

Please pray for Evan this Friday as he will be having the Ventilation Profusion Scan early Friday morning to measure the pressures between the left and right sides of his heart. This is outpatient and although they put him to sleep for this, as soon as he wakes up after the scan we will be able to go home. This is the same scan they did before his cath. in April when the pressures were 85% to the right and 15% to the left. The doctors are testing this again to be sure that the stent is working and making the pressures more 50-50. I will post Fri. evening and let everyone know how it went however; I'm sure I will not know the results until the cardio visit next Wed.
I often blog about the trials and tribulations of being a mom but today I wanted to post just a few of the reasons why this little boy has me wrapped around his finger. I wish I could tape him and play it for you so you could hear his sweet little voice when he says, "Mommy, I love you soooo much", or "Pwweease". The way that asks for you to lay down with him so he can run his fingers through your hair while falling asleep. The way that he whispers in his monitor, "Mommy, Daddy, I'm awake." That he asks his daddy 100 times is it dark yet so that they can go outside and see the moon and wish on the stars and that every night he wishes for a sucker. The way he runs to the front door when I leave my mom's for work and waves and blows kisses. To hear him sing Row, Row, Row your boat, "Nerrily, Nerrily, Nerrily, Nerrily." The way your heart breaks when you enter the parking garage at Kosair Childrens Hospital and Evan begins to cry because he knows that the only time we go in a parking garage is there and he knows he is getting ready to get hurt. The way he use to tell the nurses "Last one please" and "Thank You" when getting his RSV shots. The way he believes his bear is real and talks to him, "Bear, you want to play trains, you do, okay!" That we have listened to "He's My Son" so much that Evan knows the words and sweetly sings along and that if he notices tears in my eyes he will ask, "Mommy are you happy" and kisses you until your smiling. The way he reminds me to say prayers at bedtime and remembers those he loves and thanks God for them. He is such a blessing and Mommy and Daddy are totally wrapped around his chubby little fingers!

Hives

My mom called yesterday after I got to work and asked if I had noticed the welps on Evan's back and I hadn't noticed any that morning. About an hour later she called again and said they were spreading and getting worse and I began to panic. I called the pedi. office which I seem to be bothering a lot this week, as last Fri. he ran a fever and I took him in and it was a cold and then again yesterday for the rash. They were surprised to see us again so soon since we haven't been there since the end of the RSV shots in April and now we are there twice within one week! They made us go through the contagious diseases entrance and we were ushered to a back room. Come to find out it is hives, an allergic reaction to "something" and upon examining him and everything he had eaten and done all weekend we cannot find anything that he hasn't done or eaten before. After 3 doses of benedryl every four hours the hives are almost gone. Evan didn't act like it bothered him at all! Hope everyone else is enduring this heat!!!

Team Bravehearts 2006

Well the team photo this year was interesting, but turned out really good. It is really hard to get 5 kids to sit and smile at the same time when they are all under the age of 2 1/2 yrs old. The lady took about 30 pictures and we picked the very first one she took since it was one of the only ones that at least everyone was sitting, not crying and looking in the general direction of the camera LOL. Evan is at the top left. This weekend was hot and Eric was on call for his work and gone most of the time so, Evan and I braved it and went to an outdoor b-day party and my hair looked like I had dunked it in the pool before the first half hour was over. Evan got in the big pool with my friends husband with only his swimmies on and swam all over by himself! I could not believe it, he kept saying, "Mommy look, look at me, I swimming all by myself!" He didn't much like it when I made him get out but friends hubby said his little heart was beating really hard so it was time for a rest. I'm getting my AHA site together and will post a link sometime this week.

Braveheart Golf Scramble

We are finally getting our Heartwalk "Team Bravehearts" together. We are all such procrastinators! So far there are 5 or 6 CHD families that have joined the team and we are all meeting this Fri. to have the kids picture taken together for the flyers and such. AHA has used last years pictures on flyers they send out when someone signs up to walk this year, very exciting! They have also asked for our stories and pictures to post at the entrance to the stadium for the day of the walk (not just us, everyone that is interested.) Also, we have been given permission by AHA to have a Golf Scramble to benefit Team Bravehearts and have been very lucky that our Team Captain lives in a Golf Community where we will be able to host it. The scramble is on Sept. 10th and it will either be a total flop or a total success, we are hoping for success! We have sent out letters for businesses to sponsor a hole or golf cart and then put up flyers for the teams, we'll see what happens.

Support

Most of you that keep up with our blog already know baby Sammy but, for those of you that don't please keep him in your thoughts and prayers as he is having his 2nd OHS on Wed. (see blog to right.) Sammy is such a cutie and his mom's blog always makes me smile.
I know that support means a lot to CHD families and in hard times it really means so much to know that people are thinking and praying for you. Because of this, myself and a few other local heart mom's that I've become very close to had our very first Mended Little Hearts meeting last night to start a chapter here in Louisville. We will be under Mended Hearts who already has a chapter here until we get established but then will break off into our own group. You have to have 10 members to begin a group and last night we had 4 CHD families show up for the meeting so, I believe we are off to a good start. I'm excited to be a part of this group and get to know these families more and become a support system for new CHD families in our area.

Parenting

Two year olds, whew what a handful. Evan has been getting a little better controlling his temper lately. I believe that being able to spend a little time every week with other kiddos is helping him. He is still very stingy and bossy. He is always with adults, either Eric & I or my mom & dad and now that he is not on any restrictions and we are able to take him out and about, he was having a real issue with other kids. It was really sad to see him look so out of his element and angry that someone else wanted to play with his toys, or theirs for that matter, he thinks everything is his. In our recent play dates it made me feel like a horrible parent when all I'm doing is saying, "Evan don't take that away, Evan don't hit, Evan don't push, Evan share, Evan be easy." You don't want your kid to be "that kid." So, Eric and I and my parents have been working really hard at trying to get a handle on this and make Evan mind. Some kids you can look at them and they melt and don't do whatever they were acting out at again but Evan, he has such a strong will and nothing seems to work. We tried the naughty mat (Super Nanny idea, I'd like to see her come to my house) and he told me, "Thanks mommy, I like this mat" ARGH!!! He is really spoiled being the only child and only grandchild there is no one for him to have to share with on a daily basis but, we started him in Sunday school about 3 months ago and it really seems to be helping. They claim he is an angel in there and this Sun. we went to a birthday party and there were lots of kids and Evan did really good with sharing and just had a blast, I was so proud of him and felt just like one of the other parents. I'm sure that doesn't really make sense but, in the beginning I was holding on to him for dear life and wouldn't let him out of my sight and then after his surgery I did but like I said was always getting on to him and then this past week I've been able to just watch him blossom and play and just relax more and let him be him. It's funny how we mold our children and my fear of him getting sick or hurt kept him from being a part of things which affected his behavior when kids were allowed to come around and that it took me relaxing and gaining ahold of myself for Evan to be the sweet loving little boy in public that he is in private. So yeah, two year olds what a handful but what a blessing!

Ventilation Perfusion Scan

Evan's cardio called and scheduled his follow up Ventilation Perfusion Scan for Aug. 11th. They had told us they would do this a few months after the stent implementation to be sure the pressures are more equal now that the stent is in the left pulmonary artery, before the stent, the pressures were right side - 85% and left side - 15%. I know that it is nothing serious but I'm already nervous about the results. I'm wondering how often a stent implementation is done and the pressures don't equal out and why they wouldn't being the arteries are more equal size now. I'm sure this must have happened before or they wouldn't do a Vent. Perf. scan to be sure. If it's not more equal what can they do to make it so? Evan is now 2 1/2 yrs. old and when he was born we were so anxious about his surgery and thought that afterwards he would be "fixed" not totally understanding the lifetime follow ups and other procedures that would be needed to keep him healthy. Makes the Heart Walk a little more special and personal again being that the money raised could make a future procedure less invasive (cath. valve implementation) a possibility for our little miracle. I'm so thankful for my little boy and wish I worried less and enjoyed each moment more. Sorry about not posting any pic's of our little Braveheart lately I keep leaving the digital camera on and running the $15.00 battery down and haven't broke down and told hubby that I've done it again (wouldn't be a big deal except that this is probably the 4th time I've done this.) We took him to ride on Thomas the Tank Engine this weekend, it stops in Bardstown once a year, I'll just say we'll never do that again, thousands of screaming kids in the hot humid Kentucky weather, ick! Definately not worth the bucks it took for the 25 min. ride.

My Mom

Today is my mom's birthday and I want to post what an amazing women she is but, before I do I would like for all reading this to say a prayer for Sophia (see blog to the right) and her family as she is having another open heart surgery today.
My mom did not work but stayed home and was always there when any of us needed her. For me it was running me to school, church, choir practice (I was at one time involved with 3 choirs), being camp cook and many other activities. She gave everything to her family and thought of us above herself always. She was always late, but always there. She is the type of person who cannot go to the grocery once a week but finds a few things she needs to run and pick up every few days, her out I suppose. She always stayed up when I was a teenager and dating until I returned home and was someone I could never lie to, she could look at me and I would break down and tell the truth, even if it meant I would be in trouble. When I finished college and was still working part time we enjoyed walking together in the mornings and I was sad when I got a fulltime job thinking our time together would be less and less. When I became pregnant with Evan she was turning 60 and told me she would keep the baby for me at least a few days a week. She was by my side during the labor and was the one who helped me check out and took me to the childrens hospital to be by his side. She took turns coming back to see her new grandson and only grandbaby and spend the rest of the time in the waiting room to see if there was anything she could do for us and praying. Eric and I would leave the hospital around midnight and found comfort in my parent's home and returned each morning at 6:00. After Evan's condition was found and all the restrictions were given my mom came and spent most of 2 months at my home helping me to remain calm and enjoy my new baby. She learned all the signs of distress and listened intently after every doctors appointment to what the doctors plans were and how to be the best caregiver to Evan as she now agreed that when I returned to work she would keep Evan all week. What a blessing that has been to not have to put Evan in daycare and to be able to know that he is minutes from my work with my mom. During Evan's surgery and heart cath's she has been there by our side and also been the one to call many family member's and keep everyone updated. She came daily to the hospital after Evan's surgery, bringing him much joy to see his Mawmaw. I wanted Evan to call my parents Grandmother and Grand Daddy but Evan had his own names in mind and they are Mawmaw and Pawpaw. He loves them so much and come Mon. is excited to be going back to their home after the weekend, which he says, Daddy and Mommy's home is mine and Mawmaw and Pawpaw's home is mine too. When Eric is working late or on a hunting/fishing trip with my dad Evan and I always stay with my mom in my old room and I cannot begin to express the comfort that brings me to not have to stay alone and the ways she spoils us while we are there. She gives my baby so much love and care and we are so blessed. I could go on and on but, I cannot begin to thank you enough Mom for your friendship and support you have given me throughout my life and the love and care you now give my baby, your sweetheart. (Evan will always answer that he is mommy's baby but Mawmaw's sweetheart.) Happy Birthday Mawmaw!

Corbin

Please say a prayer for the Grabb family. Corbin lost his battle he has been fighting ever since his Fontan surgery months ago. I have been following their care page at carepage.com CorbinGrabb for many months and was really praying and hoping he could pull through this. This families faith is evident and so powerful and has been a testimony to many. I don't understand why babies like Corbin have to be taken away. Crying and praying for the Grabb family and so many other's whose babies have been taken away. It makes me feel horrible and at a lost for words, what do you say to someone who just lost their precious baby? I guess there is nothing and even things I think of seem inadequate.

Catfish Festival

Thanks for everyone's concern, Evan is doing just fine now. His fever left Fri. night and has not returned and no other symptoms other than a lot of wax in his ear last night after bath time. Maybe it was a slight ear infection or teething, who knows. We met last Sat. night with our Heart Walk team and I'm so excited about all we have planned for this year's Kentuckiana Heart Walk, more to come later about that. Eric and my dad are leaving this Fri. for the catfish festival that is in Morgantown, KY where my family is from. This is a 4 day festival where the Green River is stocked with tagged catfish and if you catch a tagged fish and turn in the tag, then all tags are put in for a drawing for up to $50,000. Of course every year they come back with all their stories on how they had a fish hooked and saw the tag and it got away, LOL. I think they enjoy taking my dad's boat out more than anything else! So, Evan and I will be staying at mom's from Fri.-Tue. because I'm a whimp and hate staying home alone. I use to go to the festival - thought it was lots of fun when I was a kid. They have carnival rides those four day's at the Butler County Fair and I loved staying with my cousins. I still would love to see the family but, the fair doesn't hold it's sparkle like it use too and we have the Kentucky State Fair in Louisville so, I'll take Evan to that. I'm such a home body (mine or my parents) and do not like the whole packing everything you can imagine you might need now that I have a kiddo. So, the city women (me and my mom) along with Evan will be shopping and eating out while our country husbands are fishing. Bring home the money!!!

Stupid Me!

I can't believe this, just yesterday I posted on Jacob's blog that Evan has luckily only had one fever and other than his heart stuff he has never been sick but that one time. Stupid me just had to say it and guess what, Evan is sick. He kind of acted whiney all day yesterday, I thought it was just him missing his bottle because he was playing fine. Last night during bathtime he said he was cold and I checked his forehead and it was hot so I got him out of the tub and he was shivering and crying and wouldn't even stand to get his pj's on. By the the time I got him dressed and checked his temp. (100.5) he was asleep on the couch and moaning and groaning. I felt so bad for him, I've never seen him act like this and I was really worried so I slept in his bed and kept him warm. He never just lays down and goes to sleep like that, you could really tell he felt horrible. The fever comes down with Tylenol and no other symptoms are showing yet so I'm not sure if I should take him to see the doc or not. I hate to take him because I'm sure they will just say it is a virus and he would probably end up catching something else while we were there. Guess I'll wait until around noon and see if the fever comes back when the Tylenol wears off. This is no fun.

Crazy Obsessed with the Pressure Washer

Okay, I'm really having too much fun using a pressure washer we borrowed from Eric's brother! You see, Eric (with help from his brother and my dad) built a 2 1/2 car garage at our house, don't get too impressed just yet, it took from Nov. 2003 until now!!! Let's just say it was a work in progress as they started in the winter and then it was too cold and then Evan was born and well you all know how stressful that was then the work began again and stopped when it was too hot and then Evan's surgery and then too cold again, so on and so on but, YIPEE it is done and looks great! Well since it took so long, the supplies got dirty just lying around so Eric's brother let us borrow the pressure washer to clean it up. The garage was the main thing but I was just excited and went ahead and did the house too, everything was covered in yeast as we do live in the Bourbon Capital of the world and the little black yeast specks from the distilleries were all over the shutters and gutters and that just cleaned it right up. I have worked on it the last two nights and you will not believe how excited I am, I love to clean and this is right up my ally, Eric just shakes his head and walks off, he know's I'm not stopping until everything is spick and span!!! All I have left is the walkway and porch. Unbelieveable how much happiness this has brought me and I'm sure no one else notices that my shutters look brand new or that my gutters are sparkling white. My brother called me the Mad Pressure Wash Women, LOL.
On another note my little boy is growing up way too fast! Evan has always been attached to his bottle and really nothing else and the doc had told me to let him keep having it since he was so attached and that we might need it before/after the cath. to calm him down. Well the cath. was 2 months ago and Evan was still taking his bottle. That is until Sun., I accidentially left it at my mom's and when we got home and got ready for bed I realized and told him we lost it and I put it in a cup and he had none of that but, he didn't cry about the bottle either. So, the bottle is gone and he really isn't drinking milk from a cup but, we'll keep trying.

The Men in my Life

Father's Day is this Sunday and I'm dedicating this entry to the two men who had a hand in raising me ~ my dad and my brother, and the man that is raising my child ~ my husband. I'm the baby in my family, I was born 15 years after my brother and my parents were in their mid thirties. My dad was always the provider for our family, working hard every day from 7:00-4:00 and home every day at 4:20. My dad worked at our towns Gas and Electric company and had a somewhat dangerous job working on electrical lines and transformers. Back in 1999 Eric and I had just gotten engaged and I was going to school full time and working part time. My brother had just had kidney stone surgery and had called me at work and asked that I go to the grocery for him that evening after work. I was pretty busy that day, had already been to school all morning and was working and had to rehearse that night back at school for a concert. I was not thrilled to have to grocery shop for my brother and decided looking at the clock that it was 4:20 and my dad should be home, maybe he could go to the grocery. I called home and no answer and tried again 10 minutes later. I knew that dad was rarely late so, I dialed again and listened to the messages on the answering machine. There was 1 message from a guy my dad works with who is also a neighbor saying that he was sorry for what happened today and that if we needed anything like getting my dad's truck home from work to just call and he would be happy to help. WHAT??!! I called my brother back and demanded to know what was going on and he told me that Dad had been electrocuted at work and that he was just trying to get me to his house so we could go to the hospital together. I left and when I arrived I had no memory from the time I left work until I got to the hospital. Dad was electrocuted with 14,000 volts of electricity. The electricity went through one hand across his chest and out the other hand and blew him off a tall Fiberglas ladder which they say saved him because they believe when he hit the ground the blow started his heart back. My dad came home 5 days later and I daily helped him dress and doctor the wounds on his fingers. He still takes medication because of the fried nerve endings and memory loss but, he is such a blessing. Now its been 7 years since the accident and although he took early retirement (he worked there for 32 yrs.) he is still alive and blesses our family with his stubbornness. What would Evan do without his Papaw? I love you daddy, your a miracle.
As I said my brother is 15 years my elder so, he was my cool dad. The one they trusted to leave me with but still let me get away with a little more than my parents would have. I always felt so "cool" riding around with him listening to "cool" music doing "cool" things. He has taught me so much about life and diversity and loving someone because of who they are and their individuality. I would not be who I am today without him and the life lessons he taught his little sis. My son absolutely loves him and has given him the nickname of "Munc" because when first learning his name he couldn't say Uncle Michael so Munc it became. Evan now knows that "Munc" is Uncle Michael but will correct you if you try to use that name instead of Munc. I hope that Munc knows that his little sister loves him and is so grateful for our relationship.
Eric and I married in 2000 and bought our first home in 2002. We were so excited and ready to start a family together. I got pregnant right away and we were so excited. It was October 2002 and within weeks after we found out I was pregnant I began to spot. We called the doctors and went for several ultrasounds and everytime they reassured us that everything was okay and they baby looked fine. At 12 weeks pregnant I woke up early for church and my water broke. Eric tried to convince me on the way to the hospital that everything was fine but, we both knew. I couldn't go home and stayed with my parents for a few days and Eric went home and put up anything that might remind me of the baby. I'm sure that was hard on him and I really think the miscarriage sent us both into a sort of depression for a while. About 6 months later we decided to try again and immediately became pregnant and had no complications throughout the entire pregnancy. Because of the babies size the doctors decided to induce labor on Feb. 5 but the baby didn't come until 2:20am on Feb. 6. We were thrilled, Evan Thomas was finally here and he was perfect. After family went home we were able to catch a few hours of sleep with our little one in the room with us and we just smiled, it was perfect, we were finally a family. The next morning at rounds they kept Evan longer than they had said and I sent Eric to find out why. When he returned I knew something was wrong and with tears in his eyes and a determined face he told me we had to get to the NICU that something was wrong. That was the beginning of our ride with having a child with a CHD. Tetralogy of Fallot, is the diagnosis that we were given. We were so scared, scared of losing him and scared of what life was going to be like. Two years later with 1 surgery and 2 cath's behind us we are still together as a family. There have been ups and downs, scary times and happy times but, we made it. Our lives are forever changed. Eric has always been there for me and Evan and for that I'm grateful. Thank you for being a wonderful husband and a wonderful father to our child I could not have made it without you. XOXO

My Birthday is Over

My birthday was back in Nov. but my DH bought me season tickets to the Broadway of Louisville so my birthday lasted from Nov. until yesterday. My brother and his family and my mom also got tickets so we have spent 5 Sundays together the last 6 months seeing; The King and I, Annie, Hairspray, Tuesdays with Morrie and yesterday my favorite, Little Women. I sure have had a blast. Yesterday especially made me miss my college days. I majored in Music and I miss singing. It's weird, I went to college for Music and it was my life for 5 years, (yes it took me 5 years to get a major and a minor, I spent one semester crying over a boy) and now the only songs I sing are "Twinkle, Twinkle Little Star" and the such. I was so proud of our college choir and all we accomplished, we even sang at the 2001 Presidential Inauguration. Man does time change a person, I'm not sure I could do all that now. Anyway, seeing the show yesterday reminded me of how much I love to sing and love music and how it was not too long ago that I was on that very stage singing (only in the choir, I'm not a soloist). Anyway, I can't wait until Oct. and hope that somehow I get tickets again, I really really enjoyed myself.
Sat. we took Evan to see Cars with my BF Kelley and her little boy Logan. Boy did they have fun, mostly eating popcorn and sno-caps, found out they are really good together, yummy. Neither kid lasted through the whole show but we did see all but about 20 minutes of it. Kelley and I grew up next door to one another and stayed neighbors until I was 8 and then they moved 12 miles away. Kelley and I thought that it was the end of our friendship and I still have the Strawberry Shortcake notecard that says, "Sarah, I will miss you and I hope that you find another bestfriend. Love, Kelley". Needless to say we still spent every weekend together and the friendship has grown through the years and now that we are both parents we have big plans for our boys to be best of friends, I guess they will decide that but we are going to give them plenty of opportunities. Not sure how many people stay so close with their childhood friends but, I count myself very lucky.

Pictures

Coots Cousins/Coots Brothers & Sisters











Evan's new bed

The Family

We have been on the go ever since our vacation. Every year my dad's family which consists of 15 brothers and sisters and a bunch of cousins and 2nd cousins get together for Memorial Day at our family park, The Coots Park in Morgantown KY. This side of my family is huge but, I feel very blessed to have each and everyone of them in my life. For those of my cousins who are more like sisters, I love ya and am so happy we got to spend a little time together and can't wait until your visit later this summer! This weekend Evan's new bed came in and we put it together in a rush Fri. night. I was real worried about how he would do but, HE LOVES IT!!! He just jumped and laughed when he saw it, he is doing really good with it and is sleeping all night in there by himself. We also went this weekend with my mom's family and put flowers on Mamaw's grave however Evan and I spent most the time in the church because Evan kept saying he needed to potty. Finally I told him to quit telling me he needed to go if he really didn't need to and he said, "but Mommy I just needed a little air, it is hot outside" ha, ha my city slicker loves air conditioning. I never get to see my mom's side of the family so I was excited to see them but, I should have known there would be no visiting for me while Evan was around. (ha)
Please remember a friend of mines friend's family in prayer. They had a little girl last week, Alyssa. She was born with coarctation of the aorta with other defects and the surgeon (same one as Evan's) said that either he will be able to fix it in the operating room or she will not come out of there. They are just trying to buy time for her to grow and she is really shocking them that she can hold her own right now.
Also for Sophia (see blog to the right) she had her cath. this week, which was successful and is having surgery later this month.

CHD Quilt

I've been trying to add pictures of our vacation to the previous posts and for some reason it is not working. I then remembered I had forgotten to tell everyone that we received an email saying Evan's quilt block has been made for the CHD quilt. For those that are not familiar with the CHD Awareness Quilt, here is the link: http://www.chdquilt.org/ . They said they would send a picture of the quilt once it was placed on one.

Back to the Grind

Vacation is over : ( but, we had a wonderful time. The mountains were beautiful and we could not have asked for better weather. Our cabin was very nice and the boys just loved that they were able to go fishing in the creek with their daddies! I think my favorite was the Dixie Stampede, I highly recommend going especially if you have kids, Evan is still talking about the buffalo and the horses. The dvd in the car was a life saver and kept Evan content for the entire trip there and back, when he wasn't sleeping. The big announcement from this past week is that Evan is potty trained, YAHOO!!! We had been trying for a couple of weeks, putting big boy pants on and taking him about every hour or so but, he wasn't telling us when he needed to and had an accident or two everyday. I was just about to stop and say let's wait a while and try again and then Sat. morning he woke up and told me he needed to go potty and that was it, he has told us everytime since and has had no accidents. Still wearing diaper to bed but, I am so excited. My baby is growing up. The key to getting Evan to potty and drink from a cup is not to tell him his is a big boy b/c if you do he will cry and say, "no mommy, I'm just a baby". He really gets upset if we tell him he is a big boy, not sure why he is determined to stay a baby since there is no babies around for him to compete for attention with but, I don't mind him thinking he is still my little baby. On another note Nova's mom, see the blog to the right, is compiling a list of financial resources for families that need assistance while their child is in the hospital or with hospital bills, if you need help she has quite a list and also if you can add to the list of resources I'm sure she would appreciate it.

I Need This Vacation

Okay, so things are going great health wise so why am I still so anxious? I'm not sure when this happened to me really, of course I've always been the type of person who likes control, things done right and a certain way. It has been explained to me that when a person who is controlling has something happen suddenly to them that is out of their control they go into overdrive on things they do have control over. I can't explain the inner force that seems to push me to do things just so so and honestly I wish I could go against it but, I can't. I really thought that once Evan had his surgery and things calmed down that so would I but, I'm still filling the demands of my silly quirks (lines in the carpet from the vaccuum, maintaining a certain speed while driving is a big one for me, checking email a certain number of times a day, hanging clothes a certain way, etc. the list goes on.) We leave Sat. (our 6th wedding anniversary) for Gatlinburg for 4 days with friends and I'm hoping I don't drive Eric crazy on the trip there. I'm really going to try to just be quiet like the passenger should be and let him drive without my input. Praying that this vacation brings a calmness to my spirit and refreshes my soul. I really need to get away and just have some fun. Watch out Gatlinburg here come the Karr/Vogelsberg families!

Good News!

We got great news from Dr. McOmber yesterday! He said that the stent and the digoxin look like they are doing a great job at decreasing the size of the right ventricle and that Evan's heart is in great shape. He has requested that we have another Ventilation Perfusion Scan done in 3 months to give a more accurate account of the pressures to be sure they are more equal, they were 85-15 before the cath. He also said that if the VPS proves that the pressure are more equal he would not be surprised if we didn't have to have anything else done for 10 yrs., WOW!!! Of course that is not a for sure thing but, that Dr. McOmber feels that confident on how things are going is a huge relief to us! Couldn't ask for a better Mother's Day present! Hoping all of you have a wonderful Mother's Day!

Tomorrow's Checkup

Tomorrow is our first checkup with Evan's cardio since the cath. for balloon angio and stent implementation. Needless to say I'm a little anxious to hear how things are going since the cath. I make myself a little crazy with the "what if's". I really wish that I was a more calm/positive person and did not question things so much, I believe it would make things much easier for myself. I try really hard to hide these feelings but, am sure that those around me can tell that I'm tense. I'm not that good at hiding my emotions. I know that GOD is in control and no matter the outcome of tomorrow's checkup that is still true. I'm taking the day off work to spend with my doodle and then the appointment is tomorrow afternoon. Please pray with us that tomorrow's appointment shows that the left pulmonary artery is working well with the new stent and that his right ventricle has responded to the left PA by not having to overwork and that the digoxin is doing it's job to put off valve replacement for some time. Evan is doing really well and is really enjoying his Sunday school class, poor Ms. Bonnie and Ms. Missy - I think there were 6 boys last week. Evan is such the show off - sang "Jesus Loves Me" to the entire class! We are also planning a vacation with my best friend and her family to Gatlinburg. Can't wait to get away for a while. The pic's are from the Balloon Glow.

Derby Festivities

This week is Derby week in Louisville. We started out with Thunder over Louisville, Hot Air Balloon glow and race, Steamboat race, Pegasus Parade and ending with the Oaks - Lilies for the Phillies and the Derby - Run for the Roses at Churchill Downs. I'm sure I've missed some of the going ons but, most of us locals attend the smaller events and have parties at home for the Derby, too many crowds!! We did go to the Balloon glow and I will post some pics of Evan in awe of those huge hot air balloons, we had a great time. Next week is Evan's 1st checkup with his cardio since the stent. We are praying that we get good news there and that everything is functioning properly. Evan seems to be doing very well and is certainly enjoying getting to go out more, esp. getting go to church as we started back 2 weeks ago. He is so use to it just being him (only child/grandchild a little spoiled), he was a little out of his element the first week back to Sunday School and had a hard time interacting with the other kids but, quickly found his place and seems to do a little better each week.

Move to a twin bed or not???

Nothing much going on right now, things have been pretty quiet this past week. Last Thur.'s ballgame got rained out so Team Bravehearts didn't get to make their appearance. Evan was just as happy to go eat at Cracker Barrel, although he likes the store more than the restaurant, we always have to pick up some kind of toy/candy to keep him seated. Eating out is really tabboo for us still. Evan is so busy, he just can't stand to sit still and we always feel like we've ruined everyone's dinner around us. We've become more of a Golden Corral family than an O'Charley's one, if you can't get your food as soon as you sit down than Evan has waited too long and you might as well forget it. Evan is still having trouble sleeping, not sure if it is from being in the hospital or if it is just Evan. He has never been a good sleeper and when he was first born I was terrified to have him out of my sight and he slept in a co-sleeper bassinet in our room hooked to our bed for the first 4 months and even when we did move him to his crib in his room, if he cried I would go get him. For the last year I have gotten him to sleep in our bed and then once he is asleep Eric moves him to his crib and he will sleep there for about 1/2 the night from 9:00-2:00 and then he cries for us to move him to the chouch (couch), so off him and Eric go to the couch for the rest of the night 2:00-6:30. In all that's about 9 1/2 hrs. of sleep at night and then he usually takes a 2 hr. nap every afternoon. I'm not sure what to do at this point to make him a better sleeper. Everyone always jokes with me about not calling after 9 b/c even the slightest creek will wake him up, I'm not kidding if you step on part of the floor that creeks down the hall Evan will be wide awake! I'm sure it is my fault he is such a light sleeper but, when the doctor's scared the daylights out of me when he was born I just did the best I could and when I got him to sleep I just wanted everyone to be quiet to be sure not to wake him. He seems to sleep sound in our bed or on the couch so, we are thinking about getting him a big boy bed and see if that helps. Not sure if it is too early for that or not but, he seems to not sleep good in his crib. Advice on when other's moved their kiddos to twin bed's would be appreciated. Yesterday was my brother's birthday, Evan calls him Munc (Uncle Michael) he knows his name but when he first started talking, he couldn't say it and decided on Munc and now if you say his name Evan will say, "Uncle Michael's name is Munc." Happy Birthday Munc!!!

Team Bravehearts

Today our local baseball team, the Louisville Riverbats are having an evening of appreciation for Kentuckiana Heart Walk's MVPs of 2005. Evan was a member of Team Bravehearts which included 2 other little boy's here locally that were also born with TOF and a little girl who was born with VSD and an ASD that I met through work. I feel so proud of our little team and what these other families have come to mean to me. It's weird to think that we would have never met (probably) if it hadn't been for our little boys being born with TOF. Being able to call them or meeting them for lunch or just being a part of their lives by going to b-day parties is so meaningful as we celebrate the lives of our amazing little boys. We have all been through so much together and their friendship means so very much to me. Looking forward to another Heart Walk in Sept. 2006. Way to go MVPs of team Bravehearts, Friends for Life!!!

Easter

I know ~ I'm playing catch up! We were able to take Evan to see the Easter bunny Fri. afternoon at the local mall. He ran right up to him and said, "Hippity, Hoppity, please bring me an Easter basket!" As you can tell from that remark we have been reading a lot of Easter books! Our best friends came over Sat. with their little boy and girl and we painted and hid eggs for the boys, they had a blast. Sun. was very hectic as holidays always are for us. But, we had a great time seeing everyone and I will remember this Easter as one that was rejoiceful and at ease.

Pic's of Evan Post Cath.

Just thought I would post some pictures of Evan from the cath. and give a more rested update. As said before they were able to stent the left pulmonary artery. This was such a major success, the doctors were all thrilled with the outcome of the cath. During the cath. they noticed that his valve is leaking more than expected, the ring holding his valve had to be cut during his first surgery to relieve it which caused a leaky valve. They said the right side of his heart is still enlarged and the two reasons for that were 1.) The left pulmonary artery stenosis, which they relieved and 2.) the leaky valve. They hoped that with being able to stent the left pulmonary artery and putting Evan back on Digoxin they could put off needing a valve replacement as long as possible. They could not give us any time range other than it could be 1 yr. or it could be 10 yrs. and the longer the better. It all kinda depends on how much the stent and Digoxin helps relieve the right side of his heart. We were told that we need to start treating Evan like a normal little boy so that when the time comes we will see signs of tiredness etc. This is exciting and new for us, we have always been under such restrictions and I'm going to have to work really hard to not worry so much. Michael (see Sophia's link to the right) posted a special reminder the other day to, in short, "make room for joy." Pray for Sophia as her cath. did not go so well and they are facing more surgery in the near future.

We are Home!!!

We are home and boy is Evan happy about that. The cath was successful, the cardio said that if they could have picked an outcome they would have picked the one we were given. The right pulmonary artery was 8mm and the left (the side that was narrowed) was only apprx. 3mm. They used a stent and made the left side almost 8mm. It took about 3.5 hrs. for them to complete the procedure. Evan did really well. When we first got there he didn't know where we were and asked if we were at a party, little did he know what the day held for him. After the cardio explained everything he did in the lab, he informed us that is was procedural for cath. patients who are admitted to stay in ICU. So, we spent one very long day in ICU, oh the memories. We were right next to the nurses station so all in all from about 12:30 yesterday afternoon until we left at noon today Evan slept 4 hrs. the rest of the time we spent trying to keep Evan still. He let everyone who came in the room know he did not want to be there. He begged for us to take him home and thanked the doctor for giving him walking papers! Thanks to all of you who prayed for Evan!!! Evan will be on baby asprin for blood thinning for 3 months and then was also put back on digoxin because of his leaky valve. All in all everything went really well and we are really, really glad to be home!

Tommorow's Cath.

We will be going in tommorow morning at 7:00 to Kosair Childrens Hospital for Evan's cath. Dr. Recto and his team will be performing the cath. They plan to insert the cath. tube into a vein in his groin and then lead a stent into the pulmonary artery and once that is in place they will insert a balloon to widen the stent. Please pray for Evan, Dr. Recto and his team tomorrow. Also that this intervention in the cath. lab will work as the only option we have been given if this fails is another open heart. I will post an update tommorow when things settle down. They told us to plan to stay overnight if they are able to intervene. I'm anxious about tomorrow and just ready for it to be over. I know that Evan is in good hands and that GOD is going to take care of him. Thank all of you for your support and prayers, we truly appreciate it!

DiGeorge Test is Negative!

Dr. Meiners looked in Evan's chart last Fri. and saw where Evan had the FISH test for chormosone abnormalities when he was transferred to Kosair the day his was born. The paper said Evan had been tested, but did not give the results. Dr. Meiner's called the hospital today and just called and said that a chromosone test was completed with the results of no chromosone abnormalities found and a specific test done for DiGeorge 22qll deletion and the results were, DiGeorge 22qll deletion not found. One less thing to worry about. Now we just worry about the cath. on Wed. and for the balloon angio with stent to do its wonders on that little pulmonary artery. GOD answers prayers, so please pray for us.

Post Synagis and Pre Cath Celebration

We didn't exactly skip when we left the doctor's after Evan's last synagis shot. He cried the whole way there and begged me not to take him to see Dr. Meiners. Mamaw and I made the mistake of mentioning Dr. Meiner's name before we left and from then on Evan knew exactly where we were going and why and even though we were telling him that this was the last time, he wasn't hearing it and pleaded for me to turn around and go home. I'm so glad that those nasty shots are behind us. I know they protected him but, it was hard seeing him cry like that every month. Evan loves movies so, we figured what a better time than now to take him to his first one so, yesterday we went to see Ice Age II. Evan thinks that scrat is the funniest thing chasing after his acorn, his little laughs were heard above everyone else in the theatre. He had a blast and ate his fair share of popcorn. He was really good for the most part, up and down out of his chair and doing his little dances whenever music was played. However, the last half hour was spent trying to keep him from running up and down the steps, he just couldn't keep still. Thankfully it was a matinee and there were not very many people in the theatre and those who were there were chasing their kiddos too! We had a good time and Evan was still talking about his first movie when I dropped him off at Mamaw's this morning.

I'm requesting anyone that is reading this to send up a prayer for Nova's family, see a link to his blog to the right. Nova passed away yesterday afternoon. I have checked on Nova every morning through his mom's blog site dedicated to him for the last several weeks. Nova had gone through so much, I can't imagine. Again, please pray for comfort for his family.

Synagis Shots

This Friday is our last round of Synagis shots YIPEE!!!!!!!!! I know most people have no idea how happy I am about this or why I'm happy about this but believe me, I think we will throw a party Fri. night in celebration!!! Evan has had synagis shots from the time he was born from Oct.-Apr. so in all that is a total 17 months of having to get shots. When he was born he only had to have 1 shot each month but it is 1 shot for every 10 lbs. so by the next season when he was one he required 2 shots and this season he has required 3. These shots are muscle shots and are very painful. This season Evan is big enough that he knows what is going on and makes sure he lets myself and the nurses know he doesn't like it. He begs the nurse not to give him boo boo's and once myself and the other nurse restrain him, he begins begging for it to be the last one. When it is over he politely tells the nurse "Thank-You" and then asks for a blue sucker. Usually, we both leave with a tear streaked face. Tomorrow I think I will skip out of the office and sing a song.

DiGeorge Test

Dr. McOmber just called. He cannot find in Evan's files if he was ever tested for DiGeorge. He apologized saying that he had assumed it had already been done as he tests his patients upon diagnosis with Tetralogy and had always figured that our old office had already done the testing. He is going to look into it more and see if the file is at the hospital or not, says he will be surprised if he was never tested as it is so commonly linked with Tetralogy. He said that Evan is smart and doing well however, it is a possibility, and that we will wait for the results and not to worry until we are told he has it. Also to remember that a diagnosis doesn't change the fact that Evan is doing exceptionally well. He said that DiGeorge or CHARGE is not a syndrome that progressively gets worse although signs sometimes show once school starts like, problems with math, etc. I guess we'll just have to wait. Why can't next Wed. just be over with already? Sometimes I think the waiting kills you, once it is over with you can deal with the results but the waiting seems like the game we have been playing since Evan's birth. You hate to wish time away because he is so precious right here and now but, always seems like we are waiting for the next test or procedure. We just love our little boy and want the very best for him. We need strength to be thankful for our circumstances and realize that things could be much worse, which I know they could.