Off to Cincinnati!

Leaving for Cincinnati tomorrow morning! I can't wait to have this trip over with and get these two boys back together. As they get older, separating them gets harder and harder. We just keep telling ourselves that it is one step closer to getting his trach out! With that said, I am also so thankful we are getting a lot of these surgeries over with while Carson is young enough that he doesn't fully comprehend everything that is going on, it keeps some of the anxiety away and allows him to hang onto more of his sweet innocence! Thanks again for all the prayers!

I will update as soon as I can...Surgery is scheduled for 11:10 am (Eastern time) on Wednesday and we should be discharged Thursday!

Prayer Request!

Well, surgery is just a little over two weeks away...I forgot to mention one of my biggest prayer requests, in the last post, in regards to the upcoming surgery. He will be having a bronchoscopy (meaning they will take a look at his airway overall). I am REALLY praying that they get a good baseline picture of what his airway looks like. So, I am praying he is 100% going into it (he has had more secretions the last week or so but seems to have turned the corner now). They have told us that an 'inflamed or irritated airway" has to be under control before going into the big reconstructive surgery (whenever that may be). Anyway, we had never heard that Carson's airway looked inflamed (including the first evaluation in January) until his most recent bronch in Cincinnati this past March. This could have been due to a number of things, being stressed, throwing up more, or irritants from the air, etc. So, again, I'm just praying that they get the most accurate information from the bronchoscopy this time. Thanks in advance to all our prayer warriors!!

Holy Cow its been awhile!

Okay, well I knew it had been awhile since I did an update but I didn't realize it had been a month! It's been busy around here as I'm sure everyone's summer has been! We've been doing well overall...we've had several exciting moments! Carson's eating is still very sporadic but (with the help of Robin - his speech therapist) we've had a few breakthroughs. When given a good incentive (a new game Robin made), Carson has taken up to 16-20 small bites of baby food/yogurt. VERY IMPRESSIVE! It is so comforting to see this but also frustrating because as he may do it a couple days in a row...he then stops for several days. But we keep chugging along. He has also eaten up to two little yogurt melts at a sitting. This may not seem like much but it brought me to tears the first time he did it. The fact that he would put it in his mouth, let it dissolve and then swallow it without gagging was awesome! As I've said before, his oral feeding/intake is by the far the hardest part of his care for me. It takes so much perseverance with little payback at times (so times when he eats a little bit are huge for us!) The other challenge for me and Preston is his vomitting. It is still better than say, back in March, but he has started spitting up/vomitting several times a day again (not as much volume) but still vomitting. It is challenging for us...1. because cleaning up puke off your carpet every day (or several times a day) is frustrating (okay maybe infuriating at times) 2. it occasionally seems like Carson does it voluntarily - I'm not saying he does it to make us mad but he does it just because he knows he can and 3. it is challenging to know when or how to discipline him or if we should just ignore it (& to keep our cool either way). Anyways, I just pray for the day that I don't have to clean up puke but until then, I will be grateful that I have sweet Carson because he could have easily never made it home. (trying to follow 'Jesus Calling's' advice - keep a trusting and thankful heart)

Kellen also had a first...he took a full bottle sitting by himself (yes, I realize that most kids are not taking bottles at this age but frankly, I don't care right now...if he'll drink milk out of a bottle without a fight - he can : ) This is a huge praise because up until about 7 months ago...we would have to coerce him into drinking a bottle!

Carson is walking really well now (almost running at times) so he can keep up with Kellen better! They LOVE playing and laughing together! It is SO fun to watch!

We made our first trip to Columbia a couple weeks ago... so the boys got to see where Uncle James' lives and where Mommy & Daddy went to college. We had ALOT of fun! They also got to meet a couple little girls (children of some of my friends) that are more there size. They didn't quite know what to think about girls : )

We also had a wonderful 4th of July, with lots of family and friends! Carson was okay with the first couple fireworks but after a few he did NOT like the loud noise so he finished the fireworks off, inside the house. Now, Kellen loved the fireworks, especially the sparklers with Poppy! We even had a family photo shoot, thanks to Ahdra!

Carson has his next surgery scheduled for July 31st in Cincinnati. He will be having a bronchoscopy and a supraglottalplasty (to address the shape of his epiglottis). The recovery should not be very bad after this surgery. We are expecting only an overnight stay. I am cautiously optimistic and am hoping to get some good news but if nothing else, hopefully we will have a better idea what the next few years will hold for Carson! Thank you for all your prayers! I'm praying now for the team of doctors that will be involved and for Carson's experience/recovery!

Sorry the pictures are out of order...I got tired of messing with them...

Mizzou campus...this is where Preston proposed to me!

Look at all those curls : )

Look Mom...its a girl!!!

PT buddies!

The whole gang...

Father's Day scavenger hunt

Out for a cruise!

"Uh...is Dad going to get mad at me for wearing high heels?"

Sharing a granola bar before Daddy goes to work (EVERY morning!)

Sparklers with Poppy!

Ready for the 4th of July parade!

Ready to sing on the Post Office steps

The whole clan...

Love this picture of Grampe and Mems with the boys!

Update from the Clark household

Man, I really thought I had this ALL under control and we were doing well...that is, until I opened the George Foreman at lunch to make a grilled cheese. See, Mom & Sarah have both been gone the last couple weeks, so Preston and I have had more time with just the two of us and the boys. And it actually went REALLY well, which is a HUGE prayer answered, seeing that a year ago (& probably even six months ago) it would have been a HUGE challenge! Anyways, back to the George Foreman...I thought I had been doing good, making dinners each night, keeping everyone fed, the house cleaned up, the boys on their schedule, etc. etc. Except when I opened the George Foreman, I found a tuna cake left from over a week ago! SICK!!! Yes, that means I had forgotten to clean the George. Yes, I had smelled a slightly, fishy smell but I just thought it must be something in the trash. LOL! I just had to smile as I threw the leftover cake away. Good one, huh!?!

But other than that, we ARE doing well! Carson is back to his 'normal' and, knock on wood, is not puking much - in fact, it is usually just more like 'spit up' a couple times a day. So he is gaining weight....YAY! He broke 24 pounds and is back to the 25th percentile on the growth chart. Thank you God and another huge prayer answered (especially since we decided to cancel the pyloroplasty). Preston is getting sleep again at night, meaning Carson's secretions are back to normal. And the boys continue to LOVE playing outside despite the heat. Kellen is also growing and has actually been eating better the last few days : ) We continue to work with Carson on eating by mouth but really haven't made any huge strides but at least he is still taking sips from his sippy cup or spoon and will occasionally take bites of yogurt or baby food. We WILL continue to persevere...thank you for the prayers because meal time/Carson's eating is one area that can be stressful. It's just one of those things that I wish I knew WHEN Carson would start eating (because I do think he will eventually eat by mouth).

I'm sure all moms do this but I catch myself just staring at Carson and Kellen throughout the day, wondering where my little babies went. It seems like they have become little BOYS just overnight. If anyone ever doubts there is a God...just take a look at the perfectness of little children : ) (I'm not saying they are perfect all the time but they are just so stinkin' cute : ) Carson is walking more and much faster and has now mastered getting up from the floor without pulling up on anything. Kellen runs all day long and climbs on anything and everything. They LOVE following each other around and getting into whatever the other one is in (sometimes leading to disagreements : ) The boys jabber ALL day long and they are very good at understanding us but don't use many words themselves. We just recently started trying some sign language and I have actually been REALLY impressed!

Anyways, here are a bunch of pictures...

 First, a few from a year ago...

The FIRST fight : )

The Rogersville Wildcat Crew!!!

Snack time! I think Poppy might have had more than Kellen: )

Unloading the dishwasher...they are big helpers, you just have to be really fast to make sure the bowls aren't dropped.

Wagon rides are the best!!

Jacob and Becky came to visit : ) and guess what?!? we went on a wagon ride...

These were their smiles on command but it looks like the Clark duet!

Cruising in his new Puma outfit from Mimi & Papa!

They always want to turn their stools upside down...

NO MORE PICTURES! I just want to go outside!!!

Memorial Day Weekend

We had a wonderful weekend...with lots of fun activities for the boys! They enjoyed their first crawfish boil (they didn't try any but enjoyed watching all the kids!) and then spent yesterday at Mimi and Papa's (Preston's parents).

This was an anniversary, of sorts, because last year (on Memorial Day) was the FIRST time the boys went to Mimi and Papa's house. I probably would not have remembered that except, I was working on their baby books...Yes, I realize, I am over a year behind : )... and saw it. But, it was good timing because it made me realize how far we have come, once again! Some other things I had noted from May 2012...For Carson, he took his first bath WITHOUT crying/screaming and I also had noted that the trip to Mimi and Papa's a year ago, was the first time Carson rode in his car seat without crying/screaming. Looking back, I didn't realize how irritable/fussy Carson was for a 6 month old (I realize he had every reason to be) but to see how happy of a kid he is now, is a true miracle! Yesterday, he was talking, talking, talking to the cat and walking ALL over the place. Thank you God!

For Kellen, a year ago he had just figured out how to roll over and loved playing with his toes : ) Yesterday, he was red in the face (and his little arms) from trying to keep up with Meredith outside.

Other praises this past week...Carson GAINED weight...he now weighs 23 lb & 3 oz. This is the most he has weighed yet. He was close to this same weight in March before we went to Cincinnati and before the Gtube shennanigans/complications. He is still throwing up some, but it is far less volume than before surgery and is typically caused by coughing or getting really upset. Kellen also gained weight and is 23 lb 7 oz. YAY for Kellen as he is not a big eater! And lastly, we got Carson's tumor markers back (lab results that can be elevated if cancer is present - i.e. if there was a recurrence of the teratoma) and they were lower than 6 months ago and well within the normal range!

Carson continues to have more secretions (which means Preston doesn't get much sleep at night) but this is also improving. Thank you all for the prayers...I KNOW it plays a big part!

Crawfish!!! (don't the boys look thrilled : )

Hangin' with Margo and Meredith at Mimi & Papa's house

Home again, Home again!

Carson was SO SO SO excited to be home and has spent the first hour and a half going around to each of his favorite toys : ) We did switch over to a G-button...and so far, so good. We have done two feedings with success! It is really nice to not have so much on his belly and there isn't a tube hanging off him at all times! Here are a couple pictures of a G-tube vs the G-button!

Before...lots of tape, duoderm, guaze, and a long tube

After...just a little button (the discoloration of his skin is from a treatment of silver nitrate we did to get rid of excess granulation tissue)

Discharged!

As far as we know, we will be discharged this morning. Carson had this tonsils and adenoids removed yesterday morning. Dr. Costa said the surgery went well, said his tonsils and adenoids were NOT extremely large (a 2 on a scale of 4) but said he agreed with Cincinnati that this procedure needed to be done to optimize his airway. We checked another surgery off the list. YAY! Carson did really well overall. He was pretty sleepy yesterday and you could tell he was uncomfortable, especially when he coughed but I was impressed (as usual). Carson is a real trooper! He seemed in even better spirits this morning but through it all, he waved at doctors, nurses, and fellow patients : ) Carson required more supplemental oxygen yesterday than normal but after talking to Dr. Costa, he isn't surprised because when you've had a little 'bug' going into surgery, anesthesia has a bigger influence on lung function but he said this should resolve quickly (& we did see an improvement even overnight).

Our discharge is somewhat delayed because we are waiting to attempt a G-button this morning. The surgery nurse is supposed to come to measure for it this morning and then hopefully send us home with one. We are praying that it works this time! It has been a long time coming, as most kids would have had it over year ago.

Thank you once again for all your prayers...I would say we had a very successful trip and I'm glad we went ahead with surgery...now that Carson's recovery continues well.

Carson was already thinking how he was going to get out of here yesterday!

A good morning wave for Daddy!

Kellen took care of the flowers while we were gone : )