The other night as we were making dinner Caden said to me that he and Cameron were special because they had heart surgery.  I had to tell him that no, it is just him that is special for heart surgery.  He doesn't fully realize how special he is.  Only .01% of babies born in the U.S. have what he has.

I get anxious before his cardiology appointments.  He goes in next month for his annual checkup.  The fact that he has been on annual checkups for several years now is amazing in and of itself.  While I don't believe that he is ready for another surgery just yet, we were told that his next replacement surgery will be between the ages of 7 and 10.  He'll be 7 in November.  It scares me.

There was a moving - and haunting - experience last weekend that will never leave my memory.  I hate to see Caden struggle to keep up with his friends. I hate the fact that he is "special" gets thrown in my face every once in a while.  I don't notice his setbacks most of the time.

Last weekend we went to a hometown football game with friends.  Caden could not keep up with the other kids running around and jumping down and climbing up a small (3 foot?) retaining wall.  He would try so hard to get up, then have to run around the hill to the gate, or sit down and scoot until he could jump off.  By the time he was up or down the kids had run off to another part of the football stadium and he'd be lost, searching for his friends.  This happened over and over and over and it was truly heart breaking.

I watched this for a few minutes, seeing the disappointment on his face over and over again.  I went down and stood by the retaining wall watching the other kids so that I could tell him where they went so that he could catch up with them.  He was so tired with red cheeks and breathing a little heavier than normal.  I told him what he already knows - that if he's tired he can come sit with us and watch the game.  Of course that was not an acceptable option for him.  I kept reminding myself that he's 6.  He wants to run and play and have fun with his friends.  He wants to be able to do what they do - and he SHOULD be able to do.  I hate that for him.  Hate it.  The look of defeat on his face, the look of exhaustion and disappointment.  I would do anything to change that for him.

I worry that this is what happens to him every day at recess.  He won't talk about it which only heightens my suspicions. I wasn't exactly popular in school and the last thing I want is for my child to be left behind or "uncool" for something that he cannot control.  Caden is COOL!  He's so fun and so witty and he deserves to have fun like the other kids without getting behind or tired.

Like I said, I get anxious before cardiology appointments.  I can't help it.  The closer he gets to appointments and the bigger/older he gets the more I worry.  He's eating an amazing amount of food right now, which most likely means that he is not ready for surgery.  When the conduit needs to be replaced the most common signs are extreme exhaustion during normal activities, heavy sweating and a lack of appetite.  He has none of those during the average day.

Being a heart mom is hard.  I am so proud of him, for something that he doesn't even comprehend yet. While on the other hand I am scared to death for him.  I would do anything to make his heart healthy.  To change the fact that he'll need future surgeries.  There is no way around that.  He will get bigger (he's so tall for his age!) and the conduit they placed in his heart as an infant will soon become too small or will calcify over time.

I wish I could convey my own heartbreak in a way that would suffice over text.  I can't seem to bring words to the feelings that I have for Caden and his heart defect.  I don't blame myself for his heart defect.  All I can do is be strong and take things in stride.  I will explain to him the hows and whys of the ways that he is "special" as time goes along, I only hope that he has enough time before the next surgery for him to be able to truly understand and accept the fact that he will need surgery again.  I know if I were him I would be so scared.

God, grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And wisdom to know the difference.

Cardiology Checkup (10/2012)

A photo from Caden's annual cardiology checkup in October of 2012.  Everything looks great!  We go back in one year for another checkup.

Caden's Cardiology Checkup - 10/5/11

We went in today for Caden's 6 month cardiology checkup. We didn't tell him until yesterday because he freaks out about going to the doctor - understandably. Once he realized that it was the heart doctor he calmed down and actually got excited because she lets him watch movies while he gets the echo done. So sweet.

The appointment went as usual, but this time there were two residents in the room with us. That was almost nicer because Dr. Battiste would explain everything in more detail. So... we have good news!!

Caden's pressures are still relatively low, about the same as they were 6 months ago. This is important because the higher these numbers go, the closer he is to needing another surgery. We're hoping for a few more years yet. It seems like we've been saying that for a few years now.

All of his valves leak moderately (still no change). She did say that his lower number of the pressures will have to get to around 40 before we have to go to Kansas City. Today he was at 21.2, almost exactly the same as last time. Yay!

What is even more exciting? Because she lowered Caden's meds last time, he doesn't have to get labs drawn today. That is the worst part about cardiology days around here. He knows exactly what's going to happen before we even get to the lab and it is not pretty. I am so relieved we didn't have to do that today.

We go back in one year, Caden will be almost SIX years old by then! I cannot believe his is as old as he is now, although he thinks beyond his age. I think these lessons he's had to learn so early in life will benefit him in the long run. The heart kids sure do teach us adults a lesson or two sometimes.

Hugs to my heart mom buddies, and to all of our friends. Your support means a lot more than you may realize. ♥

Scars

It's been a while since I posted. Nothing big, nothing new with us... for once. Caden will be 5 years old in a few months. Five years... seems like forever. I had a thought last night. I went and looked at some old pictures of him. The ones before all of the scars.

Every time I touch Cameron's chest I think about Caden's. I can't help it. It angers me that I don't have more pictures of Caden before surgery. He was so young. I find it ironic that I literally cannot imagine my child without scars, while most parents can't imagine their child with scars.

I don't like to look. I don't have a choice. Neither does he.

I'm still waiting for him to ask. I'm dreading the thought of explaining it to him. I wish it would just go away. My poor baby has been through enough. Our family has been through enough. He has an estimated 2-4 years before the next surgery. I wonder how things will be different then? He'll be in school. He'll have friends and want sleep-overs. He'll want to be "normal".

When we left the hospital in May of 2007, our social worker told us to treat him like a normal child. Normal children don't have scars like this. Normal children aren't in the hospital for months. Normal children don't have to have open heart surgeries. How can we treat him normally if he's not normal?

How can we treat him like a normal child when we constantly watch him for signs of heart failure? There are things he cannot and will not be able to do. Things that we have to tell him that he can't do... because of his heart.

I truly believe that at this stage in the game, it's harder for Paul and I than it is for Caden. He doesn't realize the extent of his medical issues. He doesn't realize that him being alive is a miracle. I look at his beautiful little face and I can't imagine him not here. His quirky little attitude. His hilarious sense of humor. His thoughtfulness.

I just had to get some things off my chest. It's not healthy to bottle these things inside. There's nothing wrong, don't worry. These are just some of the things I think about. Love you guys.

Cardiology Checkup - 4/27/11

This morning was Caden's semi-annual cardiology check up with Dr. Battiste in Wichita. Caden was so brave! They ran the tests they always run, and there are some changes from his previous reports.



There are two numbers they check for the pressures across the homograft. Neither of the two numbers are high enough to require surgery, or a trip to the cath lab in Kansas City, but they are higher than they have been in the past. His numbers before have always been relatively low.



She did change the dose on his medicine. Now, instead of taking liquid Captopril (10 mg) 3x per day, he will be taking 12.5 mg in a pill form 2x per day. This is good news, because now we don't have to worry about keeping his medicine refrigerated when we go on a road trip, to the zoo, or even just a holiday get together at Mom's.



We go back on October 5th for another checkup. We have always known that surgery will be required again, there is no way around that. Knowing that his homograft will eventually need to be replaced is hard, and this is the first time that his numbers have changed since we brought him home nearly 4 years ago. There is nothing we can do to change that fact, or the fear associated with it, but we are hoping to get at least another 2-3 years out of his current "part".



Thank you all for your prayers and for thinking of us today. This is not over, and in truth, it never will be. Your support means more than you will ever know. Love you guys!

Caden getting his EKG done this morning. He was so brave!!

March Update

Things are going well, it's just been a while since I've updated. We are (and have been) in the midst of the "anniversaries" of Caden's hospital stay. I hate to think of them as anniversaries, can't there be another word? I've been debating about doing an update post for a while now, so I'll bite the bullet and get some things off my chest.

I can already tell you that this weekend will be hard for me. April 2nd was the day of Caden's second surgery, and the 3rd was the day that he crashed and was given CPR for an hour. The day they put him on that machine. The day that I wrote about in Caden's Feet.

I can also tell you that April 11th will be a mini-Birthday bash for Caden. That's the day he came off of the machine. I've said it before, but it was almost like him being born again. He was pumping his own blood again, all on his own. It's so amazing. He's so amazing.

I like to think that my family has grown a lot since those days and months 4 years ago. A lot has changed for us. A lot of good things. I guess in this time of the year, I have to remind myself of these good things instead of the "anniversaries".

One thing I know without a doubt: I love all 3 of the boys in my life, and I am so happy to be living the life I am. I am thankful that things have not been more hectic than they are, I know they could be! Caden does have another checkup in April. I am not going to say too much, but I think we will be getting good news once again. He shows no outward signs of tiring easily, sweating, turning colors. I will update with the results from the next check up.

On a side note, I'm just going to throw this out there. Please do not refer to my family as "the one with all of the heart issues". It may not sound bad to you, or to whomever you're speaking with, but it upsets me and it makes me think of things I quite frankly do not want to revisit. Even though we will someday. I'd like to keep those days as far away as possible, and memories only make it worse.

Thank you for keeping him and us in your thoughts.

Medicine and Potty

Strange title, huh? But it's all exciting! Caden has successfully been weaned from his two diuretics, so now he's only on ONE medication! At one point, he was on 12 medications (I believe... it's easy to lose track). So this is a BIG deal! It's very strange only having to draw up one med as opposed to all three. He still takes it 3x per day, but that may change in the future. Most kids with his condition do get off of the meds at some point, so we'll see how long that takes.

Both of the kids did have horrible colds last week, and Paul took them to the Dr. I was afraid that it might be the weaning of the meds, but the Dr assured us not. He prescribed an inhalant steroid and refilled the Xopenex (Albuterol for heart kids), and after a few days, he is now back to normal. He's such a big boy when it comes to taking his breathing treatments.

Now on to the other big news! Cameron has been consistently going #1 and #2 on the potty at least several times a day! Woot! He won't be 2 until January, so this is very impressive to me. Caden was much older by the time he was fully potty trained. I am soooo looking forward to the days of no diapers! He loves to rip the diapers off and climb up on the big boy potty. It's adorable! As long as he doesn't fall in, I think we're good! :D

Happy Thanksgiving!

We are busy running around like crazy getting ready for the Thanksgiving Holiday, but I wanted to post an update for you guys. :) I've been told that I should do it more often... Forrest.

Caden turned 4 on Monday this week, and so far he has had 1 BIG bowling party, 1 dinner (on his actual birthday) and he'll have 1 more party on Friday (after the rest of the family gets in town). WOW! That's a lucky kid! And a big thank you to everyone that came to his party on Saturday!

Cameron is starting to use more and more words. He is very adamant when he wants something, and then as soon as you give it to him, he throws it down... only to pick it up 5 seconds later and walk away. Oh boy! He's going to be a handful like his brother. He's a very good dancer as well (which he obviously does NOT get from his dad). Hahaha

We started doing "sleepovers" for the boys on Friday nights. We let them both sleep in Caden's bed, and they watch a movie before bed. We have to go check on them every few minutes to make sure no one is bleeding, but they have a blast in there together!

Caden is the smartest little booger. He remembers everything! We were driving down the highway and he saw the car dealership. Last SUMMER (before he was even 3!) they had one of those huge inflatable slides for kids. He went down it with his Nana. When we drove by it just the other day, he said "Remember when we went there and went down the slide?" Crazy!!! It's almost scary, actually! LOL

On the way to work this morning, it was "rush hour" and the light turned green. It took a while for the line of cars to start moving and he must have been watching. He said "Green means go!" Ha! We talk about and learn things when we're driving, and I know he didn't mean it as road rage, but it was funny nonetheless!

I'll try to remember to update this more often, Forrest. :D

Caden's Annual Checkup

We went this morning to Caden's checkup. Overall, it is GREAT news!! :)

I didn't want to spring the appointment on him, and he loves going to the Dr (weird, right?!) so I told him on the way home last night that we were going to the Dr in the morning. He told me he didn't have any ickies, so he didn't need to go. Smart kid!

He didn't fully remember when we went a year ago, but he did AMAZING through the entire checkup. He had some silent tears at the beginning because he was nervous/scared, but after those were gone, he was very relaxed and even a little happy. I let him bring his Sponge Bob DVD for the echo, so I think that helped!

Overall, Caden's heart is doing amazing! :) He will be 4 next month, and he still has his original conduit (not uncommon) which they placed when he was 3 months old. She said that for the most part, the conduit still looks brand new! There is no narrowing, no calcification, and the gradient across the homograph is very low (which is what they want).

Caden is currently on 3 different medications, one for his heart and blood pressure, and 2 are diuretics. The Captopril (heart) is staying the same. The Lasix will be cut in half for 2 weeks, then stopped completely. (YAY!) Two weeks after we finish the Lasix, we will start the Aldactone wean, which will also last for 2 weeks before stopping completely. (Double YAY!)

We are going back in 6 months (April 27th) to check on how he is doing without those two medications. Hopefully things are still going great, and we will go another year before he has to get checked again!.

I also have to mention that Cameron was a real trooper through the entire appointment, which lasts about 2 hours! He didn't cry once, and he even sat on my lap while Caden was getting the echo. He held his hand and leaned over to put his head next to big brother's. How sweet!

Thank you all for your prayers, your thoughts, and of course for your support. ♥

It's that time again...

It's almost time for another checkup for Caden. We went last October, can you believe that?! WOW! Overall, he is doing well. He is just as active as his brother, he just sweats a little bit more. I truly believe that this will be a good checkup.

Cameron and Caden are becoming the best of friends... sometimes. Ha! Brothers, I guess. :) Cameron still has his blankie that he has to sleep with. He is now saying a ton of different words. If I ask him if he wants to be tickled, he points to his stomach and says "right there" and pretty well too! His favorite things to drink are juice and milk. He will eat 3 bananas a day if I let him. He looks like a little monkey with half a banana stuck in his mouth! :) I'll try to get a picture of it for you. We went to the KU game last weekend. We whooped 'em, and every time we got a touchdown, everyone started screaming. Both of the boys looked around as if to ask "Can we yell too?" They started screaming and MAN did they have a blast! I'll add some pics:

This has become Caden's standard picture face. Not sure about that... LOL

And Cam was a big cheeser the entire time! He was actually growling at the football field. Haha

I will post an update after our appointment on the 27th of October.

Caden Day

Today is Caden Day. I was getting him ready for daycare in his room. He has a Sponge Bob calendar on the wall and he was staring at it. I looked up and saw the date. I asked him if he knew what today was and he was curious. When I said "Caden Day" he got very excited! (As if he has any clue what all that really means). He's such a sweetie.

3 years ago today, we got to bring Caden home from the hospital. We had been there for almost three months, and gone through MANY things I never thought we would have to experience. Too many to remember, and quite frankly, I don't like to remember most of them. BUT, today is about celebrating Caden's health in the last 3 years, and all of the obstacles he has overcome.

Tomorrow is the Heart Walk in Hutchinson, Caden's big debut. We're gearing up for the BIG walk in Wichita, so this will be a good jumpstart! :)


Today is also the day that some dear friends lost their baby girl 2 years ago. Please visit their blog HERE and let them know you are thinking about them. We are all lighting candles today in honor of sweet baby Ava.

The walk is getting closer!

Thank you to those of you who donated to Caden's team and showed your support! :) We are getting closer and closer to the walk date. If you are planning on coming to the walk, please register. You do not have to donate, and you do not have to set a goal for yourself. You can just set it at zero if you wish. The point of signing up on Caden's team is to show how many people are expected to walk. Plus, for every 5 people that register to walk for his team now through Sunday, we get entered into a $50 gift card to Strouds! Sounds yummy! :)

Go HERE to register (click join), and go HERE to get your Caden Team apparel! If you do not see Caden's items, just search for his name, Caden Konecny. Also, use the discount code located toward the top of the page for a price break on shipping. :) I think we should all wear one of these shirts, and the proceeds go straight to his team's numbers! Wow! :) Thanks to my mom for designing the shirts and other items and for setting all of that up! :)

I hope to see you there. Please get in touch if you have any questions!

Ashlea

Please forward this information to anyone you think may want to join us.

American Heart Association

We are well into our adventure with the American Heart Association for 2010!

We have been to 3 different functions, the last being Wednesday night. Caden is an amazing little helper at the speaking engagements. He pulled out the ballots for the prizes the other night, and it was sweet. :) He did a great job!

At one point, Paul got up to go to the men's room. Caden screamed "Ooooh, I know! Daddy go pee!" Everyone was cracking up! :)

During the event the other night, we made a few phone calls to friends and family to start raising money for Caden's team. We raised $240 in 10 minutes! WOW!! A BIG THANK YOU to everyone that donated. Let's get to our goal of $1,000!!! All of the teams that raise $1,000 get entered into a drawing to go to Disney World. It's a 6 night stay right across the street from the park! WOW!! I think we might be able to reach that $1,000 mark, and how cool would it be to take the boys?!?!

You can go to this link HERE to donate to Caden's team. Just click on his name and donate. Thank you to everyone! If you donate, please leave me a comment here so that I know who you are! :)

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! :)