My Son's Broken Heart Breaks Mine!

This weekend Brad and I went to the National Congenital Heart Defect Conference in Houston. My parents watched all three of the boys. This was their first time to watch the kids overnight. They had a great time. My dad let David shoot my old bow and arrow. For those of you that may not know, I used to be the best gal archer in the state! I pulled out my old bow and we had fun shooting. My dad pulled out some old trophies and while we were gone they had competitions. David "won" a huge trophy and even Christopher won a trophy for shooting. Jacob shot too (with my Dad's help) but he wasn't too interested in a trophy like David and Christopher. The kids loved the trophies and my dad was happy to get them out of his house!

My brother had just returned from a deployment in Korea so he was at my parents with his children too. The boys love to play with Jack and Cammie, they are a few years older so the feeling may not be mutual...but at least they helped my parents by keeping my kiddos entertained! :) My mom said the kids were well behaved and didn't have any problems sleeping...well except Christopher waking up one night! I'm hoping that since my children were so well behaved (that was my mother's description of their behavior!) that they will be able to stay there again soon! My parents never left us when we were young and since she still works it is hard to convince her that she should spend her weekend with my three wild children to create chaos instead of having a quiet and relaxing weekend with just my daddy! :)

So while my kids were having a blast at their Grandparents Brad and I spent the weekend in Houston. Our main reason for going was to attend the National Congenital Heart Defect/Disease Conference. It was very informative (is that even a word??). I learned a lot about the genetics and chromosome disorders that usually go along with CHDs. It was very interesting and I think we'll probably have some more extensive tests run on Christopher. He has had some chromosone test run, but not the full screening (it is about $350,000 and insurance won't cover it!). Obviously we won't have that done, but we were advised of some specific disorders that he shows some symptoms and we'll have those checked. They are not anything serious, in fact the worst symptom of them is the heart defects, it is mainly just something good to know as some may affect his growth and will "run" in the family.

He is now three and a half years old now and I felt like I was finally comfortable with his disease. Sure it is on my mind daily, but I am finally at peace with it...or so I thought! This conference was such an eye opener for me. The Pediatric CardioThoratic Surgeon began the conference with a picture of him and his father fly fishing. You were probably thinking the same thing I was...how does this pertain to CHDs? His comment was that his personal goal when performing surgery on our children is to be able to give our children the chance to be 85 years old and healthy enough to go fly fishing with their children...unfortunately the reality of it is it will probably not happen in their lifetime. I guess I thought it was going to be more encouraging but it seemed to be much more of a reminder that my child is sick with a fatal disease with the reality of meeting other mothers that have had children die from heart diseases. Probably not the perfect timing since just last week Christopher's teacher pointed out that he seems to be tiring out faster than the other children and seems to be a little less active than he has been. I had been noticing the same thing and remembered how his pediatric cardiologist warned us that this would be the age that we should keep a closer eye on symptoms of heart failure. He has stenosis in his pulmonary artery and a leaky valve, it is causing his right ventricle to pump too hard and wears him out easily. I'd like to think it is just because it has been so darn hot...but it is hot for the other kids too! This probably sounds horrible, but for the past couple of weeks I have been secretly hoping that he is getting sick with a cold or virus or something, unfortunately he hasn't had a runny nose, coughing or any other symptoms... so I'm afraid it may be his heart. We'll head back to the pediatric cardiologist this week! For those of you thinking "Oh my gosh, why didn't you send him to the dr already?!?" We have already discussed this with our doctor and nothing will be done until he goes into heart failure. By the way, heart failure just means that his heart is changing and damaged more than it was at the previous visit. If it is the case, they'll wait until it gets to be at an unsafe level and then we'll head to Children's Hospital in Boston.

I hate to end this post on a sad note, but as I was reminded this weekend it is our life now. I try not to have too many pitty parties but I am not going to lie I HATE the fear I live with each day, the sleepless nights, wondering if the reason my child is crying is just a typical fussy fit that all kids perform or is he in pain, I hate keeping my fear of outliving my child quiet for fear of making others uncomfortable and them treating Christopher differently, I hate faking a smile and pretending that everything is OK...it is NOT.

This disease not only affects Christopher it affects our entire family! His brothers are shuffled around to doctor appointments and David knows he can't push his brother on his chest (not that he should anyway!).

It affects our marriage, we handle stress differently I know that Brad is having the same fears, especially after this weekend. We talked about Christopher's surgeons comments the morning of his open heart surgery. Dr Mayer said he was not necessarily going to be able to increase the quantity of Christopher's life, just the quality. It brought tears to our eyes. We never talk about Christopher's health problems or death. Brad is my best friend and we tell each other everything...except how we're scared! When it comes to stress we handle it differently....I need to be hugged and told everything is going to be OK - Brad wants to be left alone and not talk about it, so we don't.

It affects finances...duh!! crazy health insurance premiums and deductables; not to mention copays, medicines and the fear of what will happen after we reach his maximum insurance payout!

I hate that my son was born with heart defects and want to know WHY? Did I do something during my pregnancy to cause this? Will Christopher blame me? Siblings, marriages, finances and my poor little Christopher...something has to be done to cure him and unlike what the freakin' pediatric cardiothoratic surgeon at the conference said, it HAS to be done SOON! This is MY child dammit!

Father's Day

Our Kid Friends Came Over to Play and Make Father's Day Crafts
Our playgroup met here last week and made koozies for Father's Day. Brad was not really surprised since that is what we've done the past few years. David attached a pencil to his and got really creative about other gifts he wanted to give Brad. He went to the closet where we keep the gift bags and then traveled around the house stuffing it. So for Father's Day, Brad got his t-ball coaching t-shirt, a baseball hat that he's been having and a pocket knife from many years ago. It was really cute watching David "shop" through the house for things that Brad likes.

David's Week at C3 Camp

David with his Golden Arrow Award

Last week David attended C3 Camp. It is a camp that Chick-fil-A coordinates and sponsors at churches throughout the country. Chick-fil-A has set up a Winshape Foundation that offers residential Biblical based camps for children, marriage enrichment programs and foster homes in Georgia. C3 Day Camp is a break-off of their residential camp so they can minister to children around the country through local churches.

Pop, Jacob, Brad and David at C3 Camp

Last week, a church in Lafayette hosted the camp and David attended and then slept over with Brad's parents at night. On Monday, David called us and told us all about it. He was very excited and especially enjoyed the archery! On Wednesday, Brad's mother e-mailed us some pictures of how he dressed for Wacky Wednesday. She helped him dress up like a rock star!

David the Rock Star

On Thursday, they had a decorate your car competition. They were suppose to decorate the car to reflect their group name. David was in the Ocean group. Pop and G'ami live in the neighborhood next to the church, so they decorated their golf cart and ended up winning the competition for his group! As you can tell, they spent a lot of time and effort decorating it! David was in the blue group, so he ended up dressing in all blue and they even spray painted his hair blue! He LOVED it!!

Pop and the Ocean golf cart!

Friday was Chick-fil-A Family Day so Brad and I and the little boys met them at camp. Christopher saw the big inflatable cow in front of the church and was scared that the other cows would be there. He was so scared and wanted to be held constantly so Annette ended up bringing him back to her house. We were able to follow David around to his group break-outs. They offered a choice of many different activities like archery, soccer, dance, cheer leading, wiffle ball, wacky science, basketball....

David with his egg drop contraption.

We went to the wacky science group with David and they were having an egg drop competition. They were given four straws and a roll of tape. His group had to use those supplies to keep the egg intact from the drop. They kept it from breaking during the drop on the grass, but when they moved to the concrete it broke! After that we watched him play wiffle ball and then archery. He really enjoyed the archery and ended up winning the golden arrow award on Friday!

Jacob eating Chick-fil-A on Family Friday at C3 Camp

After the activities the minister of the church preached for a little bit and then the church band played their camp songs while the kids sang and danced. After that it was Chick-fil-A lunch time! David had so much fun, I am planning on enrolling him for a session they are having in Lake Charles later this summer. If you'd like more info on the camp or the Winshape Foundation, check out their website http://www.winshape.org/. They are also looking for churches that want to host the camp. Click on the camp link!

David dancing for Jesus

Christopher's First T-Ball Game!

Yesterday Christopher asked me at least a hundred times if it was time for T-ball. He was so excited to be big enough to play t-ball. I am one of the coaches so we went to pick up the uniforms to bring to the other players. As soon as we got the box of uniforms he wanted to put his on. Jacob was upset that he didn't have a uniform, he is not old enough to play this year. It broke my heart to see Jacob so sad, so I went and got David's uniform shirt from last year and he ended up wearing David's. When it was finally time to go to his first game, they both fell asleep in the truck! I woke Christopher when we arrived at the field...not really a good idea. He was sooooo grauchy and did not want to participate in the game. He stood out in the field but refused to put his glove on. When it was his turn to bat, he didn't want to do that either. He just sat on the side the entire game! He did not participate in the game until it was snack time...then he was a real team player!

David is playing t-ball again this year too but he is missing his first two games. This week he is staying at Pop and G'amis for church camp. Chick-fil-A cooridinates and sponsors a bible day camp. The closest one to us is in Lafayette this week. Yesterday he called and told us all about it. He is shooting "real" bow and arrows, doing Science experiments and playing wiffle ball. Yesterday after camp, G'ami was bringing him swimming. I miss him when he is gone, but he really enjoys staying at their house. Last time we went to visit them, David asked if Brad and I were staying. When we told him yes, he was disappointed. He likes it when we don't go because G'ami and Pop bring him to do fun things.

Want me to make a red beaux beaux so you can have a band-aid?

So a few months ago, the kids were going through boxes (yes, plural!) of band-aids in just a few days. Instead of wasting band-aids, I bought a bunch of stickers for the kids to put all over themselves and made a rule about band-aids. You must have a red beaux beaux for a band-aid.
Today Christopher had a red one and needed a band-aid. I gave it to him and Jacob threw a fit because he could not have a band-aid too. Christopher felt bad for him and got down in his face, put his hand on Jacob's and with such a sweet voice said, "Do you want me to make you a red beaux beaux right here? Then you can get a band-aid!". It was the sweetest and funniest thing. He wanted to make Jacob happy by getting him a band-aid and knew just how to do it....by making a bloody sore for him!

By the way, Jacob said yes!


P.S. What is the non-cajun spelling for beaux beaux? :)

May Update...

Ok, so now the May update...

David graduated Kindergarden - wow what an accomplishment! :) He had a little ceremony on his last day of school, he was chosen to be a reader. He has come such a long way since the beginning of the school year. I didn't realize how much farther behind The Dunham School was academically until he started kindergarden. David was behind in reading and math. He was able to catch up and on his final report card he had all AP (above averages the best you can get!). The first part of the year his teacher told me he would rather hang out with the girls. This was a new school to David and most of the boys (and other students) already knew each other from being in Pre-K together. By the end of the year his teacher said he was best buds with the boys. On the last day of school I had planned a fun day to bring David to Chuck E. Cheese. He enjoys going there but we don't go anymore because Christopher is terrified of Chuck. The little boys were still in Mom's Day Out and I was looking forward to spending the day with David alone...until I got dumped! One of the boys in his class invited him to go swimming after the program. I have to admit, I was kind of sad that he would rather hang out with them instead of going to Chuck E. Cheese with me. I allowed him to go and offered to bring him over to the boys house but he would rather ride with his friend!! Since I was dumped and already had child care lined up for the little ones, I had a little pitty party for myself and then ended going to hang out at work.

David reading during his graduation program

David and Julie after his graduation.

David excited to go to his friends house after the graduation program.


After David was finished with school we decided to take a vacation before it got too hot and all of the other kids around the country were out of school. We packed up the truck and luggage carrier and headed to the Smoky Mountains. The kids and I made a list of things we wanted to do and things we wanted to see. The only thing I really wanted was to see a bear. We stayed there for about four or five days hiking in the national park and doing all of the touristy things. We went to Ober Mountain. It is a ski resort in the winter and in the summer it has tobogganing, water slides, ice skating and other amusement park type rides. All of us rode up the ski lift to the top of the mountain to toboggan down. When we reached the top Brad and I just looked at each other like duhhhh...what did we just do!!?!? We realized we have THREE kids and only TWO adults. Every child must go down with an adult. Something we should have thought about before reaching the top of the mountain. Even if Brad went down with one of them, he would have to leave a child at the bottom to come back up and go down with another one...then this really nice stranger offered to go down with David. Brad and Jacob went down first so they'd be down there to meet David and then Christopher and I went after to make sure she brought David. The lady was super nice! After that, I stayed at the bottom on the playground and Brad would bring them one at a time! :) As we were leaving Ober Mountain we saw a bear in the parking lot!! That really made my trip...I was ready to head home after that, but we didn't! :) After spending some time in the Gatlinburg area we headed over to the Blue Ridge Mountains in North Carolina for a few days. We went to the Biltmore (really cool!) and on our last day we drove over to bring the boys to Tweetsie Railroad, a neat amusement park that is railroad themed. They have a real steam engine train that goes around the area. In the beginning they had a cowboy on our car. During the train ride some indians came on horseback and tried to climb on board and steal some of our loot. Christopher and Jacob weren't too crazy about it, but the rest of us really enjoyed the train ride and being able to participate in the cowboy and indian show. They have all kinds of cowboy and indian stuff. The little boys enjoyed the rides.

Brad, David and Jacob going up the mountain to toboggan down...Julie and Christopher tobogganing down.

Tonya Harding just walked by :) Jacob (not happy), David and Christopher going to attempt ice skating

I had enough... :)

David and Jacob did too!!

Disclaimer: we were never in any danger...the land was flat on the other side of the fence even though it may not appear that way!

Hear no evil, see no evil. Christopher and Jacob did not enjoy the train ride too much! :)

Easter Update...a little late

Well it seems as though I am a couple of months behind. I'll start back with Easter.

Christopher had an Easter program at his little Mom's Day Out. He did GREAT. I was worried that he was going to have stage fright, but he didn't. He was up on stage "hamming it up". He is the one wearing the khaki pants and white shirt with the tie. He did get a little distracted by the stage props and tried to pick some flowers. After his program I brought him a special treat...a peanut butter and jelly sandwich (his favorite!!).

Christopher is on the top row in the middle (white shirt with tie).

This year for Easter, we went and spent the night with Brad's parents. His brother and his family stayed the night too. It was fun having five boys under the age of six! Needless to say it was very loud and entertaining too. On Easter, we went to celebrate the safe return of cuz Jacques from serving our country in Iraq at Brad's grandmother's house. They boiled crawfish and had an Easter egg hunt for all of the grandkids.
Andrew, Bailey, Christopher, Jacob & David (the Arton grandchildren...notice ONLY boys!!)


bedtime (minus David)

I guess I should mention what happened to David. As you tell by the Easter pictures he got a little roughed up. It seems as though he has more confidence than skills in some areas...biking and skateboarding are two of them! He just took the training wheels off of his bike and was ready to do some cool bike tricks. Unfortunately, he flipped over the handlebars on landed on his face. Our neighbor is a doctor and looked at him, he thought he probably broke his nose and as you can tell by the picture, he lost a another tooth! He was pretty banged up for a while, but thankfully everything healed perfectly and we don't have any permanent reminder of the evening David flew over the handlebars (other than this picture!).


Here is a picture of the boys decorating Easter eggs at our house.