Check it out guys!

As I said before, Caden is the "rock star" of the American Heart Association Start! Heart Walk for 2010. That's a mouthful! I have been working with the AHA to get Caden's story out there, and the story was just posted on their website this week! Here's the link: Story

We had our first outing in mid-December, but next Tuesday is our first speaking engagement. Caden and I will be meeting with VP of Product Development and Engineering of Hawker and other executives from the Galichia Medical Group here in Wichita. We will be sharing his story with these very influential people.

I expect to have several more of these engagements throughout the year, so hopefully I'm not too nervous! :)

Check out the link! :)

Friend scheduled for surgery

One of Caden's heart friends will be going in for surgery in January. Please stop by and let them know you are thinking about them. Thanks!

Monique

Good report!!

I don't have a whole lot of time, but I just wanted to post about Caden's most recent trip to the cardiologist. At the beginning of each visit, she sits there with her hand on his heart. I'm not sure what she's feeling for, but she pushes down on his chest and then gets the stethoscope. She goes back forth between the hand and the stethoscope a few times, and then she looks in his ears and his mouth. She did comment on the great shape his teeth are in! :D Thanks to all that brushing. He brushes before nap time and again before bed. :)

When we got into the Echo room, he was a little leery. He had a small melt down in the first exam room, when he realized that he was at the Dr. :( He HATES going to the Dr. I can't say I blame him.

They did the EKG, and everything looked fine, the Dr. came in and started the echo, and Caden did great! :) He always does, but this time, he just watched the videos and every once in a while, he'd look at the Echo screen to see what she was doing. He was even holding her hand for a minute. Awwwwww lol

We (I mostly) always freak out when "it's taking too long". I realize that she's just being thorough, and who wouldn't want that?! It's so hard not to work yourself up though.

Turns out his numbers were slightly better than last time (AGAIN)! He just keeps getting better and better! His pressures are still very low through the conduit, and he seems to be handling his meds very well. She did say that the numbers may be better than last time because he may have been crying during the last echo. I don't remember him doing much crying that time, but it's still nice that his numbers continue to improve! :)

Because Caden is getting older, and he is not having huge growth spurts anymore, she decided that it would be okay for him to start going YEARLY!!! I about fainted. I have been waiting for the yearly visits for a long time now, and I still can't believe he's made it! :)

I really didn't care much for this particular Dr in the beginning, but the more we see her, the more friendly she becomes and the more we both begin to actually like her. She was the one that found the defect in the first place... well she performed his first echo anyway. I guess that makes me a little partial to her.

We are still on the same meds with the same doses. Have been on those doses for about a year and a half now. She said that by not upping the doses we are, in effect, weaning him off of them. Don't know how much longer he'll have to take them, she seemed a little hesitant to give a time frame.

All is well in Konecny land! :)

Cameron is doing well also. He's 10 months in less than a week! WOW that goes so fast. He is a super crawler! He'll get from one end of the house to the other in seconds! :) He's standing up on his own and starting to eat different kinds of foods. He'll be walking by Christmas, probably even Thanksgiving! :D I'll try to post pictures soon.

American Heart Association

Paul and I (and Caden) had a meeting with Teri, the director of the Start! program of the American Heart Association about 6 weeks ago. I have not blogged it yet, don't know why.

Anyway...

Paul and I are the proud parents of the 2010 poster child for the American Heart Association's Start! program! What does this mean, you ask??

Well... Several things. Caden (we) will go around to several (8?) of the large corporations here in the Wichita area (Cessna, Boeing, Hawker...) and give presentations on what it means to have a child affected by CHD. We will be able to show pictures, tell his story and show everyone (mainly execs) how amazing modern medicine is, and why they should donate to heart disease research.

Our family will be featured on the commercials on channel 3 (KSN) for the Start! Heart Walk that takes place next June. Caden will be on the brochures for the AMA, along with a condensed version of his story. He will also be on their website, as the "focus survivor".

Needless to say, we are very excited about this opportunity, as only one child or person gets picked per YEAR. I think he's just the man for the job.

On a side note: A parent on the Online Truncus group did not like the fact that we are participating in an organization that does not fund "much" to congenital heart disease research. Well... I have done some researching of my own, and what she said really bothered me. We have decided that all of the funds raised on Caden's behalf will be specifically donated to such research. I have found that I can designate where our donations go, and thus, I am pushing it all that way.

I hope you all have your DVR's set! :) I'll let you know when to be looking out for our little hero on the telly and the web. :)

Pictures and News

Sooo, it's been a while! :) Things are going well. Caden gets his hearing tested on the 13th, to make sure that's not a contributing factor in his speech (or lack thereof). Cameron goes for his 6 month checkup on the 20th. I'm interested to see how much he weighs, and what percentiles he is in. I'm sure he's right up the middle, as he has been. I'm still pumping away. He still has never had formula.. which I'm obviously proud of. ;) He's started on baby food. He does ok with cereal, but he REALLY likes the apples and sweet potatoes. He likes bananas, but they stop him up a little bit, so we're holding off on those for a while. He also like carrots, squash and green beans. :)

This is me, my sister and brother. I'm the middle child, so that's me on the right. Looks kinda like Caden, huh? ;)

Caden had a blast at the park. We went to High Park in Derby for the fireworks on the 4th... they were AWESOME!!!

Cam-o being his cute little self. This was when we were shooting off firecrackers at my mom's house. He sat in the stroller like such a big boy! How sweet! :) He can sit up very well now, only falls over occasionally. He also likes to stand up next to toys and the ottoman. I'll have to get a picture of that too. :)

I have a picture of Caden laying on this toy at about the same age... ok, not really. Caden was about 8 months old, but still :) I'll find it. Hold on... (as if you were going anywhere... LOL)

Caden's more pale than Cameron, but I think they kinda look alike. Like brothers anyway. :)

Iowa Trip

We went to Iowa last weekend, to surprise my grandma. It was a blast! We drove to KC and stayed the night with some of Paul's friends. We got into Mason early afternoon on Saturday. We went to dinner and were standing y the register at the buffet entrance when Gma walked in. She looked at Cameron first, did a double, triple take, then looked at Paul and said "Well, hi" then she looked at me and said "Well hi!!!" It was hilarious, and she was definitely surprised. She looked so happy having all 4 of her great grandkids there with her.

I got some pics from the trip:

My handsome little devil :)

Cameron was boxing everyone in sight, with the help of Great Uncle Tony. :)

Me, my boys, my cousin Casey and her boys with Grandma Schu :) Looks like Blair is fond of his Cousin Caden :)

The big boys got to hang out together with my Aunt Sandy while we went down the street to the bar. They took a bath, and we had an awesome time! :)

Tuckered out after a long day of driving, playing and family time. That's the first time they ever met! I think they liked each other. :)

No news

Things are pretty quiet on the home front. We've been pretty busy getting ready for our trip to Iowa next weekend. We are going up to surprise my grandma. We are driving to KC on Friday night, stopping by my uncle's house and then getting up early Saturday and going on up to northern Iowa. We are all going to meet at a restaurant and my aunt is going to get my grandma and bring her in. We'll have a lot of fun. She's never met Cameron, and most of my family up there have never met Caden. The last time we went up there, I was pregnant with Caden and we still had no idea about his heart. The only people that have met Caden are those that came up to the hospital to visit us while we were there.

We are staying with my cousin. She has two boys, I think the oldest is about 4 and the youngest is a couple weeks older than Caden. Her oldest was born about 3 months premature, and he was in the NICU for a very long time. I feel that we at least have a little understanding of what it's like to be stuck in he hospital for a long time.

I'll be sure to take lots of pictures! :)

Some pics

Both boys are "sleeping". Not really, just laying peacefully in their beds. Crazy, huh? lol

I thought I'd give a little update and some pics. Things are going very well. Caden is learning to speak better and better. He's really starting to put more words together and his pronunciation is getting better as well. Cameron is a rolling fool! He rolls over and over and over and eventually hits something and gets very upset. It's pretty cute. He bonks his head on the TV hutch a lot. :)

This weekend is Derby Days. There's little kiddy rides and such. I think we are going to take the kids after Paul gets home from work. :) I'll try to remember to take pics. Our camera is kinda broken. The little latches that hold the batteries in place are broken, so you have to hold it shut. Pain in the butt, but at least it works... kinda. lol

Old pictures

When uploading the pictures from our party last week, I found some old pictures on the other memory card. I couldn't believe what I saw. They were the pictures that I thought I had lost. Some of Caden pre-surgery. I knew I had them somewhere, but we had uploaded them to our old laptop, that died. I'm so glad I found them! Here they are. I think he looks like Cameron in some of them. :)

I took this one a few days before we went to KC for the first surgery. I can't remember his chest ever looking like that... His binky looks so big! I'm pretty sure there's another picture of him in the hospital, between surgeries, with that binky. On the right with the other pictures.

I don't know when or why I took this one. I think we already knew at this point that he would need surgery. I took several of his chest because I feared that I wouldn't remember his chest... good thing I did, huh?

This is of the back of his head, on or around 3/19/07. We were in room 21b, in the PICU. Don't ask how I remember these things. I think it's burned into my memory. This was only 5 weeks into our stay. We were there for about 12 weeks. It got so much worse than this, but you can see how the back of his head started to "creep up". I guess that's what you'd call it. The picture of me holding Caden on the right that says Mommy holding Caden in the PICU was taken the same day. If you were to look at him from the front, it almost looked like he had a cone head. Not anymore though! :)

Caden Day

Tomorrow is the day Caden came home from the hospital. It is also the day that our friends lost their little girl. I have mixed emotions about it, but we are planning on going out to dinner or somthing for Caden. Something fun for him, to celebrate his two year anniversary. We had a party last year. I almost cancelled it last year, because... well, I won't get into it.

Paul and I decided that every year, on that day, we would do something nice for him, and then one day he'll ask why. That part was Paul's idea. I don't know why we can't just tell him. It's not a bad thing.

On another note, I posted on my blog a little bit ago. Just upset rambling, really. FYI