Quick one...

Just to keep everyone in the loop...I spoke with a lady from Cincinnati Children's today, who is in charge of insurance preauthorization. The next step is having 1 or 2 Letters of Medical Necessity written stating the complexity and rarity of Carson's case and the need to gain medical care outside the state of Missouri. The parents are able to write one and then they highly recommend a physician write one. Thank you for the prayers! I am hoping this process doesn't take too long because we have a surgery in St. Louis already scheduled for the 24th and we were hoping we would know whether Carson was going to Cincinnati or not!

11 MONTHS!!

I can not believe these boys are going to be ONE in a month! ...How far we have come....and I can't wait to see the continued miracles!

I spoke with Cincinnati Children's yesterday and they have just started checking on insurance coverage so hopefully by the end of this week, we should now! Please be praying that Carson and Kellen can kick this bug they picked up. Kellen is still congested but seems pretty much back to normal. We have started breathing treatments with Carson and he seems to be doing better overall plus he's two top teeth are just about in so that just adds to it : (

We did get some pictures though... Sarah was out of town this weekend so we had some other special visitors come play (help)!

Auntie Julie

Look at those cheeks : )

You are SO funny Julie!

Playing with Julie and Aunt Marlene

Marlene's FAMOUS kisses!

Sweet laughter...11 months!!

Better hurry because I'm on the move!

Papa giving out horseback rides!! : )

Brothers!

Kellen just about knocked Carson over trying to get something!

NO MORE PICTURES!!!

Poppy and Kellen...you know babies don't feel the greatest when they just want to sit on your lap, but Kellen does have a pretty good seat : )

Cincinnati??

Quick update, a prayer request, and pictures...

Update: The boys (& Preston and I) LOVED their first trip to the Petelo and Nana and Poppy's house. We got to see lots of people and wish we could have seen everyone but the weekend was just not long enough. It had been a year since Preston and I were 'home' (in Rogersville). It was so good to be back! The trip to and from went fairly well. You can definitely tell that Carson is more used to long car rides but Kellen (& I) survived.

Prayer request: I spoke with Cincinnati Children's on Monday. The intake nurse took Carson's full medical history and then presented his case to the aero-digestive team (ENT, pulmonologist, and GI) yesterday. I got a call back yesterday and they are ready to go ahead with scheduling a full evaluation but we have to check with insurance first. I should be getting a call tomorrow or Monday to find out insurance approval and coverage. Cincinnati Children's is the leading hospital in the world for airway issues and reconstructions. So this is all very exciting but the biggest factor right now is whether insurance will cover it. We already have a surgery scheduled in St. Louis for next Wednesday but if we ARE going to go to Cincinnati, they encouraged us to hold off on surgery in St. Louis (just so there is less disturbance and manipulation of Carson's airway). I am just asking everyone to pray for direction, timing, and the best possible course of events for Carson's care...whether we go to Cincinnati now or in a couple years, whether with try less invasive surgeries in St. Louis first or not.

Pictures: Enjoy!!

Loaded down & ready to go (we also had Mom's car packed : )

Our welcoming crew at the Petelo!

Pat with the boys...One of the many might prayer warriors!

Kellen is showing Great Grampe the ropes

The gang...(the Big Ones & Little Ones)

Carson and Kellen's newest friend...Jace

It was GREAT to see these girls & meet Jace for the first time!

Playing in the puddles at home : )

Pictures!!

 Here are some pictures from the week! I have to say...I'm loving the fact that the boys are beginning to play WITH each other more...so much fun to watch!!!

Kellen is showing Carson the ropes

Now Carson thinks he is going to show Kellen something else : )

Love this picture! Two of my three handsome men!

Kellen LOVES playing peek-a-boo with Mimi

This guy LOVES his bouncer!

Starting to get some hair : )

Kellen's new thing...trying to lick the bubbles in the water!

Look at Carson's face...pure amazement!

We love blowing bubbles!

Playing with 'the truck'

Carson was SO excited to see bubby this morning!

"Interesting"

"Interesting" is not what you usually want to hear when medical professionals are talking about your child's case but it seems like that is what we often hear when talking about Carson. From the beginning, nothing has been 'by the book.' But I guess this just adds to the miracle of Carson and his amazing story!

Thank you all for the prayers....Preston, Carson, and I had another smooth trip to and from STL. Once again, the day was longer than expected but Dr. Costa, his ENT, spent close to an hour with us, discussing Carson's case. We started with the swallow study and like I said, the results were "interesting" in the Speech Pathologist's words. The good news is that there is still no concern about aspiration, meaning no food or liquid penetrates the airway! The interesting part was that the liquid just slowly trickles down the back of his throat, eventually triggering a swallow but then when the food enters the esophagus (tube leading to the stomach) it doesn't clear out completely into the stomach, it 'refluxes' back and forth in the esophagus until he swallows again and then the next portion of food does the same thing. On top of that, he does not swallow as frequently as he should. There is also a definite sensory component to his aversion to feeding. The speech therapist recommended following up with gastroenterology to see if they felt a need to take a closer look at the function and motility of the esophagus but also continue to attempt feeding and desensitizing his mouth. What continues to puzzle me is that he USED to take a bottle and USED to take more cereal by mouth... So we will just continue to persevere and follow up with gastroenterology at some point.

Then we went to see Dr. Costa and had a long talk with him. In the end, it was decided to check into getting a second opinion at Cincinnati Children's. They are THE leading experts in airway reconstruction and airway problems. We will have to check into it because Dr. Costa said many insurances will not cover it and thus leaves it to our own resources. I plan to call today or next week to get some more information. Dr. Costa felt confident in his plan but also said "A second opinion never hurts and they (Cincinnati) are the experts...they may have ideas that I have not thought of." But in the interim, we have scheduled a surgery (October 10th) with Dr. Costa, improving Carson's safety is the main goal. At this point, Carson is trach dependent, meaning that IF his trach came out and we were not able to get another one in...he would get into trouble very quickly. Dr. Costa's goal with this surgery is to remove some of the scar tissue in his airway, hoping to open up his airway. We will most likely need to stay the night for observation after the surgery. We did briefly touch on Dr. Costa's mention of Carson needing his trach permanently and although Dr. Costa is still concerned, he said it is still way too early and Carson is too young to make that call.

Carson did SO well today...his schedule is usually out of whack, with less sleep, on days we go to St. Louis but he was all smiles the majority of the day! Part of what's so amazing about Carson and children in general is their ability to overcome the impossible and to do it with such a happy demeanor! While we were talking to Dr. Costa, Carson was just rolling around, climbing in my arms, smiling, and babbling! A person can't help but smile when they see him!! I bundle of joy all wrapped up in a cute little boy!

Thanks again for all the prayers and please keep them coming as we follow up with more doctors and for direction in our decision making process! Much love to all!

Sorry, not many pictures this time...our camera decided to 'kill' the SD card : (

Before a walk with Mimi, Papa, Nana, and Sarah (Mom and Dad went to eat)

Gaining life's wisdom from Nana

10 Months

Well our boys have met another milestone : ) They are 10 months! And their birthday happened to fall on Mizzou's first SEC conference game (hence the outfits)!! Too bad the game didn't turn out differently. Both boys are getting bigger that's for sure. Carson is 20 pounds 5 oz, 28" and Kellen is 18 pounds 14.5 oz, 29". We've had several visitors along the way, which were wonderful!

It seems that we have mostly gotten rid of the little virus that visited the Clark household. Thank you for your prayers! Carson still has a little cough but his supplemental oxygen levels have returned to near normal levels. I just continue to pray for the winter season coming up, that the boys will remain as healthy as possible.We will return to Cardinal Glennon September 20th for a swallow study and a follow up appointment with Carson's ENT. Please be praying that the swallow study is productive (meaning Carson actually takes some food in) and gives us some answers as how to help Carson learn to eat better. We also need prayers as we will likely be deciding how to proceed, with his ENT, on removing the scar tissue at the epiglottis. We will update once we know more.

Enjoy the pictures!!

Kellen is no longer easy to take pictures of...too busy!!

I'll just hide under the blanket

Love the excitement!

Once again...Kellen is off and moving : )

Finally...a smile from Mr. Kellen

Let's go Mizzou!!

We had so much fun!!!

Kayln was awesome with the boys!!

Love Carson's face

Kayln and Linda made these shirts for the boys...so cute!!

First time with an ice cream sandwich (we will NOT give up on the ice cream) Uncle Josh had the touch.

Kellen is showing Aunt Kathy and Uncle Marvin how the toy works!

Uncle Marvin reading to Kellen

Forgot to mention that we know have a billy goat, aka Kellen...yes, he gnawed on our dining room table chair : )