Peace...I love the feeling!

Thank you for all the prayers...although we are running on very little sleep and Carson's schedule is out of whack, we have ALOT of peace after meeting with the doctor's today. I know some of that is simply from the hundreds of prayers being said for Carson and us. The other part is that these doctors seem to really know their stuff.

They said Cincinnati Children's does more airway reconstrucive surgeries than ALL other hospitals in the nation combined. They also said that of the children that come with trachs, 95% are able to have them removed over the course of treatment! That's good odds...even though Carson doesn't always have the best luck with statistics & playing the odds : ) The pulmonologist also said...after looking at Carson's case on paper, he doesn't know why Carson would not be included in that 95%... just praying they don't see anything tomorrow that changes his mind. The pulmonologist also said they are very aggressive at this hospital, taking cases that other hospitals won't even touch and also cases that have had failed attempts at other places. BUT also do NOT get in a hurry just because we all want the trach out. They look at the WHOLE picture and make sure the patient is in optimal condition for a major surgery. He also mentioned that the best chance of success for an airway reconstruction is the first attempt so it is a huge blessing that we did NOT go ahead with other surgeries PRIOR to coming to Cincinnati. Yes...God is good and DOES have everything in control...Who would have thought?!? : ) Anyways, I could go on and on about different things the pulmonologist said but overall, we just got a really good first impression.

Carson also had an Xray...they said this looks pretty good and his lung damage (as a result of the ventilator pressures needed early on) seems to be resolving. Children are amazing! Apparently their lungs remodel greatly in the first 2 years and all the way up until 7 years old. This means that most damage done in premature babies will be remodeled in the first several years.

The GI doctor was also hopeful of gaining some good insight into Carson's case & function tomorrow with the upper endoscopy. One, to determine what may be going on with his esophagus...if it is an intrinsic narrowing (a problem with the esophageal lining), an extrinsic narrowing (or something that is pressing in on the esophagus), or more a a dysmotility of the esophagus (meaning the nerve innervation has been interrupted somehow). Along with this he will take a look at the Gtube and try to also determine the possible cause of his frequent vomitting. Is he refluxing which causes him to vomit or is he just getting overly full or does he have some sort of allergy to his formula? Hopefully we will get some answers tomorrow and be able to progress with oral feedings.

Well, I know this is a long update and I probably forgot some of the info but all in all it was a good day! Now to eat and try to get some sleep!

Thanks again for all the prayers! Tomorrow Carson is scheduled to go into the OR at 11:15 am. The doctors will then all come out together to give us their initial thoughts and preliminary findings. But, again the FULL plan won't come together until the following weeks!

I've spoke with Mom and we believe Kellen's fingers will survive : ) Kellen also seems to be doing well at home...I guess I didn't have any doubts with Nana, Mimi, Papa, and Aunt Sarah in charge!

We made it!

Preston, Carson, and I made it to Cincinnati about 6:30 or 7 (Cincinnati time) yesterday evening. The trip went as well as could be expected. We missed one turn shortly after leaving Dexter but it didn't delay us much at all. Carson slept for the first 2 hours of the trip (thank you Sarah and Mom for keeping him entertained before we left : ). We only made one stop for gas and a break. Carson had his first 'gas station break' experience and he completed it by puking all over himself & Preston while I was in the bathroom. I couldn't help but laugh just a little when I came out... Oh, the joys of children. I think Carson is fine...although he did puke again in the car about an hour later (this time I caught it with the puke bucket). It may be some car sickness (which my family knows all about) or it could just be Carson.

Anyways, we made it to the hotel, which seems to be okay. Preston unloaded the vehicle while Carson and I hung out in the room and wiped everything down with Lysol : ) - you never know... It took Preston three trips to get everything (even with a luggage dolly). But we got settled in...finally got a pizza up to the room about 9 pm. I think Carson was wondering where Kellen and the rest of everyone was last night, but he did pretty good for being tired on top of being in a new place.

Please stick in a couple prayers for Preston and I...I think we are in for several nights of very little sleep. So I hope the adrenaline (& God) can carry us through until we get home. Also, say a few prayers for little Kellen. Before we left, he got a hold of my CHI (hair straightener) ....good job, me...& burnt two of his fingertips pretty good. They blistered up...I felt awful! He seemed to be in a fair amount of pain right afterwards but Mom & Sarah said the rest of the day, yesterday, went better.

I'll try to get an update up later today after we have our appointments. Today, will just be clinic visits (with anesthesia and the aerodigestive team)...so I'm not sure how much information we will get.

Thanks again for the prayers!

Update on Cincinnati

Carson is doing great but now that I have a headache, I better send out a prayer request : ) No...not for Carson, but for this momma! Yes, I had a small breakdown complete with tears and all. As Carson is laying on the couch with Preston, I was at the computer researching some of the procedures he will have while in Cincinnati and all of a sudden the tears just came. Why can't our sweet Carson just catch a break??...why can't he just have an easy road from here??...why does he have to go through all these procedures...I wish I could just do it for him. Preston said, "Liz, why are you crying?" as I am sniffling "Carson's not worried...look." And yes, Carson was sleeping as peacefully as could be. That is the beauty of children...no need to worry or get anxious because he has no idea what is up ahead. So, yes...I do ask for prayer for me, to keep it together and realize this is ALL for Carson's benefit. But MORE importantly, please keep up the prayers for the physicians and staff that will be performing the procedures, for safety for Carson, and for continued health. I think we are witnessing another miracle in the fact that Carson and Kellen have remained healthy as the flu, and every other bug, is running rampant in this area. And of course, the biggest prayer I have is for COMPLETE healing (of Carson's airway, swallow, and feeding concerns).

I spoke with a nurse from Cincinnati today and got most of the details for our trip. So for those interested...
January 8th: Anesthesia consult in the morning, Chest Xray, and GI & Pulmonary consult in the afternoon
January 9th: Surgery day with subsequent hospital stay (23 hr observation)! Carson is scheduled to be taken at 10:15am and will be in the OR for approximately an hour. They will do a laryngoscopy and flexible bronchoscopy (ENT and Pulmonology are in charge of this) to look at his airway, then an upper endoscopy will be performed by GI to look at his esophagus, stomach, and first part of his intestines. GI will also place an impedance probe at this time through his nose into his esophagus. This will remain in place for 18-24 hours and its purpose is to evaluate reflux by detecting and record the amount of stomach contents coming back up when he vomits or cries, etc. It also determines if the contents are acidic or not, how long they stay in the esophagus as well as how often it occurs. This is the first thing I'm really not looking forward to because I know it will be uncomfortable for Carson (I also hope he leaves it alone and doesn't pull it out - more prayers : )
January 10th: 10:15 am FEES (Fiberoptic endoscopic evaluation of swallow)...this is done in the ENT clinic and is the second thing I have some anxiety about. Carson will be awake as they pass a scope down through his nose to just above his epiglottis. They will then attempt to feed him (which is NOT his favorite thing anyways) and assess the swallow. Once this is completed, our plan is to head home to Dexter.

So, I am thanking everyone in advance for the prayers because I KNOW what they can do! I am definitely NOT complaining and am so thankful to have the opportunity to take Carson to Cincinnati but I do have some anxious thoughts in the midst of excitement for the trip! I will do my best to keep everyone updated along the way. We should have preliminary results after the procedures are completed but we will not know the COMPLETE plan until the following week when the team meets.

They love their barn : )

Carson is concerned because his farmhand (Kellen) is manhandling his livestock : )

Playing with Danielle : )

Kellen's favorite past time (removing EVERYTHING from the cabinets)

Christmas 2012

We hope everyone had a Merry Christmas! We had a wonderful time here with family!

The boys have remained healthy and are having a blast playing with their new toys : ) Kellen continues to improve with his walking and Carson with his crawling! We just continue to ask for prayer as the New Year and Carson's trip to Cincinnati approach. We have decided to let Mr. Kellen stay at home while we make the journey. I think it will be easier on all of us overall. I just try not to think about being gone from him for 4 days : ( But we will be busy with appointments in Cincinnati and Kellen will be more comfortable at home with things to keep him busy.

Here are some pictures from the last couple weeks!

Celebrating Mimi's birthday!

This is our set up before trach care & trach change...it is our little operating room : )

I think it is ready Dad : ) Look at those sweet buns (Kellen's that is...)

Lunch time!

Leaving for Christmas Eve at Mimi and Papa's house

He is ready to pick up the ladies!

Our crawling madman!

Christmas morning

Kellen is ready for bronco riding!

Drum set from Santa! (Oh good, something to make more noise with!)

Gotta love the books!

Christmas crew!

Mems' famous banana pudding!

Kellen LOVES the truck too!

First snow! They both LOVED it and we had lots of tears when we came in!

My handsome boys and their blue eyes!

I love our sweet family!

Carson is CRAWLING!!!

Ok...now some exciting news about Carson! He crawled ACROSS the living room this morning! Yay!! That's the furthest he has gone ever! In some ways, I believe we deter Carson more than help...in talking to his therapists and thinking about his beginnings....Carson has had someone RIGHT by his side for most of his life! So, why does he need to know how to do a whole lot for himself?!? when there is someone right there to do things for him...bring toys, pick him up, give him his binkie, and on and on. I tell myself all the time...just let him do it but you wouldn't believe how HARD that can be! So, I really just have to set him down and then move away from him so I don't help TOO much! Carson's standing balance is also improving and he is now pulling himself up on objects : ) It is SO much fun to watch!

The day after I made the post last week...Kellen surprised us with a new word..."Jesus!" It is SO sweet to hear him say it and it really does sound pretty clear. He learned it in reference to "Baby Jesus" in our nativity scene! So "Jesus" is right up there on his 'first words' list!He is also giving us more and more hugs...so sweet to feel a little ones arms around you : )

We pray everyone has a safe and blessed Christmas!

Uncle Josh made a surprise visit... or maybe it was just for the gingerbread men :) Carson also got to help!

More boxes...short ones

 wide ones....

Follow the leader (right into trouble...) haha!

And decorating Mimi's birthday cake! Happy Birthday Mimi!

Kellen is WALKING!

Sorry it has taken me so long to get another post up...I ran into blog problems...as I am NOT an experienced blogger. I have ran out of storage space and am trying to figure it out so I can continue to post pictures : ) I think I have figured out the issue...now I just need to fix it!

YES...we have another member of the bipedal group...Kellen is walking!! He took his first steps over a month ago but finally started taking multiple steps consistently just yesterday! What a joyous moment! Carson cheered him along with the rest of us! Kellen has also been doing much better with taking his bottle, eating, and the newest....going to sleep by himself! I know must people do 'sleep training' when their children are MUCH younger but because of our difficulties with getting Kellen to eat and gain weight, we weren't able to. But it has been almost two weeks and now, I can just lay Kellen down for naps or bedtime and he will go to sleep with VERY LITTLE if any crying! Thank you Jesus...you have at least made ONE thing easy for the Clark family...(this is said with a smile : )

Carson...now we are having slight problems getting him to continue to gain weight! Since we have been home, he has gone through periods when he throws up on a regular basis, typically it is in conjunction with changes in his feedings but we really haven't changed the volume of his feeds this time. Ever since Thanksgiving...he has been throwing up at least once if not 2 or 3 times a day. This makes for alot of outfit changes and carpet cleanings and some frustration because we really don't know why. My best guess is that he has been teething more, so his belly is also having the added saliva and secretions to fill it up (sorry I know this isn't the most pleasant thing to talk about : ). So, when Kellen can say "Nope" I don't want any more food/milk...Carson doesn't have a say because we pump the same amount of milk in EVERY time. But with the regular vomitting and also his increased activity level, it also means he really hasn't gained a significant amount of weight for almost two months. We are working with a dietician in St. Louis and may try to switch him over to a higher calorie formula that is made for children (not infants). So we do ask for prayers that Carson will tolerate the switch and hopefully will not throw up as much. I can't even imagine throwing up multiple times a day, every day, and not having anything to clean your mouth out with...YUCK!!!!!! The blessing though is that He continues to be the happiest little guy...he can throw up one moment and then be smiling the next : ) Carson continues to be a HUGE fan of walking laps and laps and laps around the house while someone holds his fingers! His little walk is SO precious but because he has taken to walking and usually has someone to walk with him...he has stopped his progression of crawling : ( I am SO anxious for him to have some sort of independent means of mobility...he is at a stage where he likes to go, go, go but can't do it by himself and this leads to some frustration for him (& us).

I received a rough itinerary for Carson's Cincinnati visit in January. We have initial visits with pulmonary, GI, and anesthesia on January 8th. Then Wednesday will be his surgery day with a rigid bronchoscopy, flexible bronchoscopy, and scope of his esophagus and stomach. He will stay overnight in the hospital and then Thursday he will have a FEES (Fiberoptic Endoscopic Evaluation of Swallow) exam. No times were given (they will be provided about a week in advance) so it wasn't as helpful as I was hoping. But, assuming he stays healthy, we are still set to go January 8th. I'm leaning towards taking Kellen but still ask for prayers in decided this and then also that we see the best of the best physicians in Cincinnati. We will receive preliminary results while we are in Cincinnati but the WHOLE team of doctors will not meet until the following Wednesday and they will come up with the big plan. So I pray these doctors are as good as the one's in St. Louis in terms of being willing to talk to us on the phone and answer as many questions as we have : )

As we get closer and closer to Carson's visit (less than a month away)...I have noticed myself becoming a little bit anxious. I think it is mostly because these doctor's in Cincinnati are supposed to be the best...so if we don't get the news we are hoping for, it will seem more definitive. I have ALWAYS felt and believed that Carson will get his trach out and will eventually be able to eat on his own...but recently I have had this worry of what if this is the 'cross' God has chosen for me to bear...what if I will need to change my idea of the future to include having a child with a trach... because that would mean we wouldn't get to enjoy things like bonfires, skiing (water & snow), canoe trips, swimming, playing in the creek, and I could go on and on of things that Preston and I have always LOVED but I try not to because that only brings me down. The neat thing, the God thing, was a verse (actually two verses) that happened to be on a recent day of the bible study I'm doing... Hebrews 11:1 "Now faith is confidence in what we hope for and assurance about what we do not see." WOW!! So perfect for me...so I will continue to have faith!  But then I would hear this little voice "God's timing is not our timing..." I would find myself worrying again because God doesn't always give us what we want when we want and that's where the second verse comes in Acts 20:24 "However, I consider my life worth nothing to me; my only aim is to finish the race and complete the task the Lord Jesus has given me - the task of testifying to the good news of God's grace." And that is where I try to keep my focus because even though I believe at some point Carson will be 'tube-free'...it really doesn't matter if he is or isn't because God's grace is unbelievable and I see it everyday in the lives of Carson and Kellen and I do want to complete the task Jesus has given me, whatever it may be. So with that all said...we can always use prayers to be with us, with whatever news we receive, strength to complete the next day next and to do it with joy and peace! And I will never stop praying and believing there will be a day soon that Carson is completely healed! So thank you to so many that join us in unwavering prayer!

The boys loved getting to see Memers and Poppy when they came down to make peanut brittle with us!

Reading with Mimi...they love reading books together!

Endless fun....who knew boxes were SO much fun! We have literally spent HOURS playing with this box

And it lost its side today : ( Kellen and Carson went tumbling when it ripped but not to worry...they hopped right back in : )

Quick thanks!!

Since Thanksgiving...Carson has required minimal supplemental oxygen. In fact he has gone without ANY supplemental oxygen for the past four days!!! Yay!!!! This is SO exciting for us! I think we all expecting this to happen around 6 months of age...but hey, at least it happened! So we are all thanking God. Although this doesn't change much in terms of his care, it just means that his lungs are that much stronger and healthier! This is a great milestone for him!

We had fun this past weekend putting up the Christmas decorations! Yes, I think we were pretty much done on Friday...thanks to Preston's EARLY start : ) Here are a few pictures!

Kellen loves giving Carson 'rides'...Carson doesn't look so sure about it!

Nice work Poppy! Yes...Dad made a beautiful track (while the boys were asleep)...Don't worry his hard work was demolished within a matter of seconds once the boys woke up!

Something else to get into!

Clark Griswald at work...

Christmas tree is up : )