Friday, December 21, 2012

Merry Christmas & a whole lot more

Our big guy... he is doing amazingly good. He is the smartest, cutest and silliest kid I know. He remains at the top of his class in all subjects. He loves to read. He is probably already better at Math than I am. He is blessed with another wonderful teacher this year. We have always been so blessed with good teachers. We just had his 6 month cardio check up where Dr. McOmber said, "no change see you in 6 months." I can't tell you the relief that washes over all of us when good news is given there. Evan told him the only reason he likes to come is to see him and his nurses. Dr. McOmber said, "Evan... that's why I do what I do." I got a great picture of him and his nurses. I always forget that but not this time. The night before the appointment we made cookies for his Dr. and watched White Christmas. When going to bed and saying prayers Evan asked, "am I going to have another surgery Mom?" I promised to never lie to him so I always respond with, "I don't know Evan but I don't think so... Dr. McOmber would never let you go 6 months if thought it was possible something needed to be done anytime soon." I also reminded him that his favorite nurse had called that very day and said to tell Evan they were fighting over who got to take him back. He knew his Cheryl would win - she has seniority of course. He smiled when I told him she had called... You can tell from the pictures that these nurses (a few amazing ones missing) and this Dr. are like family to us. We just love them. Anyway... Evan at bedtime the night before said, "Mom, help me think good thoughts, I can't sleep." I got my phone and told him how White Christmas is my most favorite Christmas movie and that "Count your Blessings" was a song we could learn and so I found it on my phone and we listened a few times, learning the words and sang it together. If you're worried and you can't sleep Just count your blessings instead of sheep And you'll fall asleep counting your blessings He fell asleep and I cried. My precious sweet boy that has lost his innocence having to think of things that most adults do not. But how amazing he is and I know God has such amazing things in store for him. He still claims he wants to be a cardiologist when he grows up and I told him he could do anything he wants... and I know he will. I'll be proud though no matter what he chooses... if he is happy I will be happy. Us parents we are doing just fine... working away. MS has slowed me down a bit since Thanksgiving - lost vision for what 10 days but thanks to steroids I gained it back 100%. Of course the steroids bottomed out my immune system so despite getting the flu shot I got the flu and then a secondary bronchular infection. But I'm good. You know what I'm really good... Evan's appointment went wonderful, My Mom completely recovered from her open heart surgery (did I blog about that?) and her stroke/seizures that followed that, I can say, we are well. I couldn't ask for a better Christmas gift or be more blessed. I know It's been forever since I posted.... Again. Facebook is so quick and I can go there and post cute pictures of Evan and sayings and happenings on the go. This blog though... it has been such good therapy for me. The days when I couldn't say the words but could blog them. The days that I poured my heart out with pain or rejoicing. There are so many of you that I met right here that I hold dear to my heart. There are some that I felt such connection with even though I never have met them we hold a bond - we called ourselves Heart Mom's. They would leave messages for me and/or Evan - encouraging us - praying - letting us know they understood. I would pray and send love through a comment for heart babies that I felt I knew. The love strangers who became friends showed Evan through postings touched my heart and life in so many ways. I'm a better person, first of all for being blessed to be Evan's Mommy but also to be a heart Mommy and to have met so many other Heart Mom's that encouraged and blessed me along the way. Saying all that I think that it is a great time to publish this blog in a book form for a gift for Evan. I hope that someday he will read these posts and comments and know how very much we love him and how very blessed we are to be his parents. I hope when he grows up this sits on his bookshelf and when he see's it he pulls it out and smiles and feels our love.

Monday, May 14, 2012

Brave Hearts night at the ballgame

I'm so incredibly proud of our local support group, Brave Hearts. We have gone from being a few families that happened upon each other and came up with a dream of helping other families, to doing exactly that. Signing on with the Kosair Children's Hospital Foundation was a big group decision but one we don't regret taking. What an amazing year! The families we have been able to reach out to, the donations that pour in, the camp that we get to be a part of... all of it just amazing. What a year... what a group. I'm so very thankful for the friends/family of this group. Evan has such amazing heart buddies. I'm always stunned at their bond. So WAY TO GO BRAVE HEARTS, what an amazing year, $50,000! We were invited to be guests at the Bat's game at Louisville Slugger Field where we got to thank our donor's, announce our fundraising totals for the year and throw out the first pitch. Can Brave Hearts get a Woot Woot!

Friday, March 09, 2012

Evan takes 1st place at District for Young Author's

Evan came home a month or so ago with a book he had written at school. His school was participating in the Young Author's program and he was to type his book and bind it at home. I was so proud as I read his book - his own words - his book titled, "My 3rd Surgery". He came home beaming with pride when he found out his book got 1st place in his class. A few days later he came home again beaming with pride to find out at the pep rally that he won first place at his school for 2nd grade. We were invited to the District award ceremony. We were two proud parents when his name was announced along with the districts other school's 2nd grade winners to come on stage. Then after they brought all the 13 elementary school's on stage they said, "First place goes to Evan". You should have seen his proud face. You should have ignored my proud Mommy huge smile and tears. Yep... I couldn't help it, it just overwhelmed me all of a sudden - that little boy - he is mine and I'm so very proud.

Friday, February 17, 2012

Evan is 8!

A few say they can't get to pic's so I'm posting a few of my favorites from his party. Evan says that this was the best party ever. It was definately the easiest and most inexpensive one. We bought $5 pizza's, made cupcakes and hung some black plastic from the ceilings in the basement - threw a few boxes around for them to hide behind. They had a blast and played Nerf Guns for hours. So thankful for great family and friends that celebrated with us. That was one good group of boys!

Waiting to blow out his candle

I LOVE this picture because Evan's little face looks just like his baby face...

Wednesday, January 18, 2012

My Sensitive Guy

I think of things I want to document on Evan's blog and then think - I should wait until x and then post a big update. Then he says something else that I want to document and I remember, wasn't there something else I had meant to put but, by then I have already forgotten. That's how it's been lately when I think of posting here. So... I'm posting today in fear I'll forget what I'm thinking if I wait until there is more to say, lol.
Evan is doing great. Sometimes he pushes me to the limit and I lose my cool and then others I have tears in my eyes at how proud I am of him. At school Evan stays in the top of his class. He doesn't struggle at all with any of the subjects and doesn't need help hardly with any of his homework. He loves school and doesn't want to miss a day. I was exhausted after the holiday and mentioned to him tha he and I should skip the first day back and he looked at me like I was crazy and said... I have perfect attendance and I'm not ruining that Mom. Okay... geez. He loves his teacher. He has been blessed with good teachers and so far has loved each of them. I'm so thankful for that. His testing scores are really high - in the top 2% of his grade - he and his little school/heart buddy friend hold the top % - isn't that cool?!? His handwriting does get a little sloppy and I sometimes make him redo it. Mean Mama. He usually doesn't complain though - at homework time he climbs up to the kitchen bar and 5 minutes later he is done and off to play. He loves to read and be read to. So academically at school he is doing great. Socially he is doing pretty good. He still struggles to understand relationships. He is so sensitive. He still cries very easily if his feelings are hurt. It doesn't take much to hurt his feelings and he doesn't forget it easily either. I still encourage him to try hard to not let little things get to him and his response is always, "I try Mom, I do, but it hurts to stop the cry when I need to." So he cries. He also tells everything. If Evan says how something happened you can be pretty sure it's the truth. He doesn't hold anything in, even if it is going to get him in trouble. Because he tells everything he can be known to be quite the tattler. I'm sure this is annoying to his teacher at times, it is to me. He will be telling me a whole run down of something that happened at school and it ends with "and Mom I told!" Like I should be surprised. I'm always trying to encourage him to give people a break or to remember that sometimes people, including himself, have bad days. He is so sensitive. Have I said that? Some things have really been worrying him. This usually comes out during his shower at night. He doesn't like to be in the bathroom alone so usually he gets in the shower as I'm finishing up with my nightly routine of brushing teeth and putting on moisturizer. He will ask in a slightly trembled voice "Mom, I have a question." Currently he is very worried about his middle finger. Someone at school explained to a number of kids on the playground what it was. Evan came home and asked about it and we explained in terms we were okay with and why we don't use those gestures or language. However, Evan has always liked to pop his fingers. He also uses his fingers to count sometimes, etc. He has asked probably no less than 20 times if that is okay. While he is in the shower the conversation goes
-Mom I did it again and I wondered afterwards if I was doing a bad thing or not
-Did you mean it to be bad
-no, I was just popping my fingers
-then it wasn't bad, it's only bad if you mean for it to be bad Evan
-but after I popped them I remembered what it means so is that bad because I remembered
And so the conversation goes. I've told him God gave him 10 fingers and expects him to use them for his good. He still worries and brings it up quite often. He is really hard on himself if he thinks he possibly did something bad so we have been really trying to make sure he doesn't think HE is bad. So often he pushes his limits on smart mouthing or saying what we consider bad words that I have started to worry that maybe all this is because he doesn't get enough praise. So Eric and I have really been working on making sure we praise him for all the good things he does and remind him how proud we are of him daily and that we think he is a good boy. This does seem to have helped. I wish he weren't so hard on himself. So sensitive...
I think he is going to be an amazing man someday... I just keep thinking about how hard Middle school will be for his sensitive little self. Hopefully we can keep his confidence in himself high. Thanks for checking in and from now on when something happens I want to document I'm just going to post it instead of waiting because I'm just too scatter brained for that.

Evan & His school/heart buddy Caleb at the Globetrotters game at the Yum Center.

Us at the Harlem Globetrotters game. Our local heart support group went together. What a fun night.

Wednesday, December 14, 2011

Another Great Report!

I posted in on FB from the parking lot of the cardio's office but just haven't had a chance to do so here yet BUT, we got another great report from the cardio! There hadn't been any changes since the last visit in June and we don't have to go back for 6 months again. I feel so incredibly blessed and was given the best Christmas present this Mom could hope for.
A little bit about this appointment...
I have always been honest and open about Evan's heart and all that involves it. I didn't want him to worry too much about the appointment but didnt' want to wait to tell him in the car pool line that morning that he had an appointment in fear of a meltdown. I told him the night before that he would be going to see his favorite Dr. the next afternoon. At first he was quite excited and then almost just as quick he started to cry. He said things like, I don't want to have another surgery, I can't have another surgery, please tell me I won't have to ever do that again, why do I have to go, do they think I'm going to have to have another surgery, I wish I could just get a break, I wonder why God made me this way, I wish God would take this away. All the things that just broke this Mommy's heart. I sat and listened and talked to him about how everyone has something and the good that has come from it. That our little local support group would have never been formed if it wasn't for him and the other Brave Hearts that started it. That he will help children in our community with special hearts for years to come. I also reminded him of heart friends that have it much worse off. He has a special place for one of them - Annie - and he said, your right Mom, Annie hasn't had as many breaks from this as I've had. He seemed to do okay and then broke down again at bedtime. When we got to the cardio the next day he told him that he was scared. Our cardio is awesome, have I said that before? He told Evan that he would always be honest and that let's do this echo and see. He told him all was well and Evan said, not even a cath?!? He was so happy. The cardio told him if he ever got scared and wanted reassurance to call him. How sweet! So how AWESOME is that? Another six months! I'm praying more good visits like this help Evan's fear and anxiety be less and mine as well. What an amazing present though.

Monday, December 12, 2011