Now we all know...

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

Monday is consult day with the cardio

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

We have a date....

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

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

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

Surgery was decided but no date yet...

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

Waiting another week

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

Our Brave Boy and Cath #5

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

Croup and Teeth Grinding

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

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

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

Cath Date

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

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

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

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

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











Team Brave Hearts take the field




First Pitch




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




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



Our Beloved Surgeon




Evan's favorite cardio nurses




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

Kindergarten Graduation Program

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











Bottoms out...




Awesome teachers! What a wonderful year!



Proud Mamaw and Papaw




Proud Parents!

Photo Shoot AHA & UofL Coach Strong

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

UofL Baseball Game

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

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

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

C stands for Cath and not Cancer

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

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

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


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


Evan & Munc celebrating Munc's birthday.

Spring Break

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

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

Thankful

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

Cardio Update, MS Update, Bikes and a New Neice

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




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

Cardio Update

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




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




Evan and his snowman.

Evan turns 6!

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




Evan's friends breaking boards!




Learning some moves




Evan being a black belt on his teacher




Jolly happy souls!

Some Thoughtful Moments

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




Pillow Fighting



Time for Rest!

Yellow Belt

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





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




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