What a ride (that I wouldn't mind getting off of at times)!

I'll first apologize for the silence...we initially didn't have access to a computer and then plans took a totally different direction and I had no extra energy(& limited time) to even try to explain what was going on. We are in Cincinnati...tomorrow Carson will go back to the OR at 9:05 am ET for the doctors to further evaluate his airway.

But let me back up, we had the first scope last Wednesday and we got basically the same report...we would go forward with surgery on Friday with a likely stent, possible graft, and stomal revision as necessary. Thursday, we did get to go to the zoo, and we had a blast (wow, that seems like a long time ago)!! Some of the boys' favorites were the baby cheetahs, the train ride, monkeys, penguins, polar bear....let's just say all of it!
Friday, we headed into surgery...first update was that they would be doing a rib graft (ugh, took a little air out of our sails) but then the last update we got (4.5 hours later) was that they did NOT do a rib graft. Long story short, they took a different approach. First off, they knocked Carson's two front teeth out during the scoping process (that just put a bad taste in my mouth to think of them getting rough with our baby). Carson now has a t tube (similar to a trach but it is a long open piece down AND up in the airway from his stoma with a port to the outside of his neck. (Its probably easiest to just google 't tube' to understand it). They did move his stoma down. The T tube takes the place of the stent...in theory this sounds great...you can put a cap on the exterior portion and then breathe out of your nose and mouth like normal. However, Carson has not been able to tolerate 'capping'. After a couple scopes (in his room), it has been determined that he needs to go back to the OR (tomorrow) and they will see WHAT is covering the top portion of the tube and then decide WHAT needs to be done. Although, Carson seems to be feeling better, less pain, etc. we are in a holding pattern until we see what they do tomorrow. Lots of things up in the air still...so more chances to put in all in God's hands (and these doctors') and just trust.
This stay has been harder for me...I thought I was prepared going into the surgery, but many little things along the way have tried to take that peace away. I have felt the range of emotion... numbness, peace, anger, frustration, hope, despair, but I do choose to just trust, take the next step next and stay in the moments. This is hard at times, because with this t tube, we have to administer a medication (sodium bicarbonate) into the airway EVERY 4 hours (through the day AND night). It is very irritating to the airway, it is scary for Carson, and causes a lot of discomfort as you have to cough a lot. Carson fights it more some times than others (& I really don't blame him). I don't blame Carson a bit but you can imagine the frustration that comes out in lots of unpleasant forms (he is at the mercy of the doctors, nurses, and us with little say in his care, he can't make much noise at all, he is stuck in a boring hospital room, and he has some pain). With that said, we are continually amazed at his attitude the majority of the time and his willingness to find joy in between medication times.

Prayers for tomorrow are appreciated...just for clear thought for the doctors and a good solution that allows Carson to continue on improving and get home. Prayers also that the Ronald McDonald House will open up (we were very disappointed as we thought we would be in there a WEEK ago and there is still no openings available...long story here but it did not work out as expected). Kellen and Mom have been staying in a hotel. Prayers for all of us to just take one step at a time, finding the joys in each day, the miracles amongst the pain, and peace that God only gives.

I will post pictures as soon as I can. Thank you so much for the many prayers (& I hope this makes a little sense...its a lot of new info, even for us!

Can we go to the zoo first?

The first bronchoscopy is scheduled for 9:15 am ET on Wednesday. We head out tomorrow (Tuesday) for Cincinnati. Quick run down...Wednesday they are just doing a scope to evaluate his airway and make sure nothing has changed significantly since December (that would change the plan for a second airway reconstruction on Friday, May 6th). Then, Friday will be another big surgery...they are planning to reconstruct (stabilize) his airway at the level of his current trach. It will be a 5-6 hr surgery...that will involve moving his trach site down and possible using a rib graft, then stenting the airway open for 10 days while it heals. Carson will be in the hospital for 5-7 days. The stent would then be taken out May 16th. Prayers are appreciated...for the many details of the stay (travel, rest, nice weather, & so many I don't even know), clear thought processes & minds, steady hands for the surgeons, & peace & a quick recovery for our strong Carson. Carson is so good to stay in the moment and doesn't seem to get overly anxious. We try to stay focused on the fun we have in Cincinnati and even in the hospital for Carson's sake (& ours). Up until yesterday, Carson always says he is ready to go and ready for surgery. Last night, when Preston mentioned leaving for Cincinnati in a few days, Carson said, "I don't want to go." And when we asked why, "Because it will hurt." {As I fought back the tears, I went to give him a hug & reassure him that yes, it will hurt but only for a few days & that he bounced back quickly last time}...his next statement, "Can we go to the zoo first?"....

Now, THAT is a perfect example of shifting the focus, finding the positives, and embracing our journey! Thank you God for the sweet, brave, courageous soul of Carson. I pray I can keep the same attitude.
P.S. A baby giraffe was just born a couple days ago at the Cincinnati Zoo so we are pretty pumped to see it!

I will update as I am able but don't worry if you don't see an update, it's hard to find a computer & the time to do it sometimes. I continually am working to surrender it all to God, to shift my focus from the pain of seeing my sweet boy suffer to the potential this surgery has to improve his airway. I am praying for a BIG miracle, maybe even that they don't need as extensive of a surgery but I am also praying that we see the many small miracles that I'm sure will come! The first being the wait list at the Ronald McDonald House in Cincinnati is only ONE day {that is unheard of}...it is usually 2-3 weeks or more. This means Kellen & Mom will be able to stay in Cincinnati longer and be an encouragement to Carson {& Preston & I}.

"Be strong and courageous. Do not be afraid; do not be discouraged for the Lord your God is with you wherever you go."

Joshua 1:9

Thank you for all the prayers...I have to attach some of these pictures from the past month...we've had a lot of fun! I will be so ready to get back home, with the surgery behind us, and return to all the FUN of normal life!

Praying for lots of those loving, peaceful rays! (this is in the chapel at our church)

Tball pros...

Or maybe not...the flowers are equally intriguing!

JOY!

Make that double joy!

SDC Train!

Water makes everything more fun!

The boys had so much fun with Preston's turkey decoy (once they figured out it wasn't real!)

Not only is this a cool pic...it also shows the improvement in air movement from the surgery last fall.

Guillory Crawfish Boil

Oh, the places you'll go!

Park Life!

Did I mention how much they LOVE water!

Spring is Here!

I've meant to hop on here so many times to give little updates and it always seems that time runs out or I'm just too exhausted by the end of the day. The boys have been enjoying these warmer days...SUNSHINE is just wonderful! I really think it is the best medicine (along with all the laughter that usually accompanies being outside)! Carson and Kellen have become quite the masters of their scooters and bikes...sometimes to the point that I just can't watch because I envision all the broken bones and busted mouths that could happen at any moment. But they are boys through and through...whether it's the constant wrestling, playing in the mud, finding rocks, or being crazy kids on their various wheeled toys : ) Over the past few months, our normal routine has been interspersed with a couple visits from friends, trips to see Ellie & John (Sarah's newest child), holidays, and fun with family & friends ALONG with a few reminders of how God has truly worked miracles in our life.

1.   A little while ago, one of my good friends called to see what I found most beneficial while the boys were in the NICU (she was wondering because she had a friend who just had a premie and was going to be in the NICU for awhile)...as I was contemplating those first few months & what helped us, I was overwhelmed with GRATITUDE for Preston, our family, and ALL of you who journeyed with us, finding ways to help or just covering us in prayer! Because HUMAN BEINGS were at the top of my list and the support you all provided. Of course my faith in Jesus was up there too (which has grown exponentially since that time - simply because it was that or sink). God worked through all of you...you were his hands & feet & heart. I think back on that time in the hospital when stress should have been through the roof & I just remember so much PEACE! Now, THAT can only be explained through the peace only God can give.

and

2.   Earlier this month, Carson had a couple routine follow ups with doctors in STL (endocrinology and gastroenterology)...so we made the trip to Cardinal Glennon. After four years, the site of that hospital still brings a flood of memories & emotions but also HOPE! Carson made it through his appointments with flying colors (with many comments on how well he is doing) and then we headed to see one of Carson & Kellen's primary nurses (from their NICU days) that happened to be working that day...on the way to see her, we just so happened to see two of the main surgeons in the hallway that helped deliver the boys & remove the teratoma. God wanted us to see these two surgeons, I'm sure...after FOUR years, they still remember Carson (& Kellen) and so many details of his case. These doctors haven't even seen Carson in probably two years or more, and even though they have had probably thousands of patients since then, they still remember Carson...WHY?!? Because he had a freakin' HUGE teratoma...but also because his case could have gone totally different..because his case is miraculous! In fact, one of them even said, "I don't think you all really understand how close we were to losing Carson"..."kids don't do that well on ECMO coming out of surgery"..."you don't want to put kids on ECMO right after surgery because of the bleed out risk." God is alive, he is SO alive in this world, if we only have eyes to see, ears to hear, and hearts to believe. I'm so thankful that Carson's story wasn't and isn't over...the suffering is hard but we have him here with us! We will persevere...

And we will one day go back to Cardinal Glennon trach & g-button free (God willing)!!

With Ms. Christi...one of our favorites still!

We did get Carson's next cluster of surgeries scheduled in Cincinnati...he will be having a bronchoscopy May 4th to double check that nothing has changed in his airway and then assuming it hasn't, May 6th will be another BIG reconstruction! The plan is to move his trach site down some and then reconstruct the area at the level of his current trach. This MAY involve another rib graft {Ouch!} and will definitely require another stent to be placed inside his airway to allow healing for ~10 days. The stent will then be removed May 16th. Carson will need to be in the hospital for close to a week after the May 6th reconstruction. We pray every night for healing of Carson's airway but also for guidance for the doctors' thought processes and skilled hands. The surgery procedure is so far over my head (partially because I don't WANT to know what is going to be done to Carson) that I really just pray for the doctors to make the best decisions and for the many details that I can't even name.

Update on Carson's feeding:   Carson only lost a 1/2 pound but has been maintaining his weight since January, even with the new changes of allowing him more control over the amount of food he eats by mouth. I have my okay days, my better days, and plain awful meals where I lose my patient calm {on the outside} self...but all in all, I think it has been good for all of us. Carson is eating a lot more and a bigger variety of table foods. I believe simply because he actually feels hunger at times (even if he doesn't know it)! Through these past couple months, Preston and I both agree that the next step would be to cut out his tube feeding completely because we still aren't sure he fully grasps the connection between eating, satiety, and hunger...AND how could he?!? Nothing is normal about being tube fed your entire life, he has never known any different. We WOULD continue on with this step but with surgery being about a month away, we will shift gears a bit to make sure Carson's nutrition is at its optimal level going into another big surgery.

Again, thank you for all your prayers & love!! I don't think I'll ever be able to put into the words the gratitude we feel.

First time meeting their new cousin, John Joseph...instant love!

At their first big concert...these boys LOVE their music!

Doing what they do best...acting goofy!

The boys asked, "When are your friends coming back? We had fun!"

Waiting for the Easter Bunny with Ellie

One of several egg hunts this year!

Easter Sunday...the boys later recounted for us, "Jesus died, Mary cried, then an angel came and said, Don't be afraid"

Always have to have a 'silly one'!

Nothing better than DIRT!

Their first coach...Coach Dad!  They are going to play Tball this summer : )

New Year & Lots of Fun!

Wow! Its been awhile since I've been on here...I hope you all had a wonderful Christmas season and New Year celebration. We had a busy, fun holiday season and are starting to settle into a normal routine again...and anxiously awaiting another cousin for Carson & Kellen (Sarah is due any day now!).

I cannot tell each of you that keep Carson (& our family) in your prayers, how much it means to us. We are truly blessed!! We have our rough moments but God is teaching us so much through this journey! We will not have an actual surgery date for a couple months but I'm hoping to schedule the surgery process for sometime in April. I will definitely let you know when we have an actual date.

We are making some big changes to Carson's feeding regimen/expectations...since we know we have a few months before the next surgery and we are several months out from the first reconstruction (in September), we have a small gap when nutrition (for healing purposes) is not so important. Carson gets about 1/3 of his calories by his gastric tube and the rest are by mouth, whether its drinking, eating pureed foods like yogurts and applesauce, or solid food. At one point in his feeding therapy, we were doing anything to just get him to taste some food and then eat a quantity of something. However, he has progressed much further than that and is now able to eat pureed foods easily and alot of solid foods okay. The habit I got into though was me (or Preston) just feeding him and him not having to do much of anything other than open his mouth. So, we had decided that it was time to let Carson do more of feeding himself but still have this predetermined amount we chose. This took alot of encouragement on our part because Carson just isn't used to feeding himself (although he is capable of it) and at times it came down to more of a power struggle. And as many of you know, 4 year olds can be pretty stubborn - which leads to MUCH parental frustration. Anyways, long story short, we decided this was as good of time as any to let Carson figure out what hunger/satiety is. His feeding regimen has never been normal...I mean he has a G-tube, we (along with a dietition) have always dictated how many calories per tube and I almost always got him to eat a set number of calories by mouth. That's not normal...yet it's not as easy as say with Kellen, because Carson has some legitimate swallowing deficits and oral aversions due to his anatomy and beginnings. So he is still getting two tube feedings a day but with his oral feedings, we are taking the approach of 'here's your food, either eat it or don't but there won't be more until the next snack or meal', etc. He has control of what he eats by mouth. We would appreciate all the prayers for guidance in this new plan and for even tempers for Preston and I, to really praise the things Carson does well and ignore (as much as possible) the other stuff. And also for creativity on my part for meal ideas, smoothies, etc. We have been at it a week, at times, I think we are getting somewhere but then other times, I think Carson just thinks this is the greatest thing ever. The first few days, when he didn't eat his food and I let him get down from the table...Carson would comment, "I can get down?!?" "But I didn't eat my food?!?" and then he ran over to Kellen and said excitedly, "Kellen, I can go play downstairs and I didn't even eat my food!!!" [sigh]

Now, on to the fun we've had!!! We have a new kitten, thanks to Nana & Poppy. Carson and Kellen were so excited to have another little kitten! Meet Buttercup...

Preston celebrated another birthday...thank the Lord for this man and daddy!

We've had several nice days this past month and a new favorite past time of the boys and mine is to explore the woods behind our house...a piece of heaven on earth!

We've been frequented the library for their Story Hour again (now that we don't have surgeries coming up...staying healthy is not as big a concern)...these are my most FAVORITE Superheroes!

Smart!!! Brave!!!! Tough!!!

And to top it all off, we got our first snow last night!!! These boys were pumped up!! When they woke up and got their first looks at the snow...their wonder and excitement was so much fun. Kellen said, "Mom, it's EVERYWHERE...it's even up here....it's even in the woods!!!"

And then, after breakfast, I was getting ready, while the boys were playing (waiting for me to get them ready to go outside) or so I thought...I look out the basement window and see this footprints.

Huh?!? That's weird, those aren't cat prints or deer and no one has been outside yet...and then it dawned on me with those sweet little toe prints!! Those boys let themselves out into the snow BAREFOOT!!! It didn't take much interrogation before the fessed up...HAHA!!! They just couldn't contain their excitement.

Don't worry though, we spent almost four hours out in the snow with a small break for lunch...it was WONDERFUL! We didn't get much snow but it was enough for some sledding, miniature snowmen, snow angels, hiking, and hot chocolate when we came in!

Kellen coming down on his belly

Carson thought it was fun to try to balance on the saucer... and jump off it

Then double decker sledding

Complete with a real carrot nose!

Carson really wanted to try his bike out in the snow!

All in God's timing!

We are back home (we made it back late last night). Yesterday was disappointing...Carson did great but the news wasn't exactly what we were hoping for. They just did a scope yesterday (no balloon dilation), they saw an area of scar tissue just above his trach that Dr. Cotton said will require another BIG surgery (in 4-6 months). The surgery will involve moving his trach site down, possibly another rib graft, and another stent will be placed for 10-14 days. This will mean staying in the hospital for 5-7 days afterwards and probably 4-5 surgeries including the big one in the matter of several weeks. It brings tears to my eyes just thinking of Carson having to go through all this again. It is so hard to think of your child being cut on and put through pain and discomfort! My heart breaks yet I know Carson will make it through it (as will we) and I'm sure his perfect smile will be there along the way. It's so easy to let this get us down...it is sometimes a decision to find the blessings/the good but they are always there...

Here was my view on the way home, just outside of Cincinnati. God's LIGHT shines through even the darkest clouds. His love and peace have the final say and hope is never lost. We are still moving forward just not in the way I had hoped (I was really praying for no more major surgeries).

'Show me your ways, O Lord, teach me your paths. Guide me in your truth and teach me, for you are God my Savior' Psalm 25:4-5

Then today, Carson's speech therapist came over and she gave me her fortune (& on the back was my lucky number ; )

Not too long after that, as I was thinking about surgery and the miracles I hope to see, namely getting the trach out, Carson comes up to me with a 'letter' he wrote in his hands. "Mom, this says, don't be afraid." So the tears just start flowing and I have to explain why I'm crying : ) Once again...God speaking through Carson!

Do not fear, for I am with you. Do not be afraid for I am your God, I will strengthen and help you. I will uphold you with my righteous right hand. Isaiah 41:10

On top of all that...today has been wonderful! Today's high was in the 60's. The boys and I got to play outside, go hiking in our woods, and then have lunch out on the porch! : ) LOVE 60 deg weather in December! Life IS good and these boys make it WONDERFUL! Love to all!

PS...No idea, why they still have their helmets on. Haha!

Headed to Cincinnati Tuesday

Well, here we are...its time to head to Cincinnati. Surgery is scheduled for 11:50 ET on Wednesday, December 9th. After several phone calls, we decided that it was best to try to get this surgery/evaluation done despite the fact that Carson is not 100%. He feels and acts fine but he has a runny nose and drainage. I did take him to see his pediatrician this morning and Dr. Cory felt it was fine to go forward, there is no lower airway involvement. I am praying that all goes well and that this is the best decision. I WOULD like to have this step out of the way so we can continue on with all the wonderful Christmas festivities.

The boys had a wonderful Thanksgiving and are totally in on all the Christmas preparation. They helped me get all the decorations out and we finally got our tree yesterday and decorated it last night. They had a ball and we only lost one ornament ; ) Their excitement makes the holidays that much better.

Thank you for the many prayers and positive thoughts! Oh, this surgery should be fairly quick...they are planning to do a bronchoscopy with a balloon dilation (the dilation just involves inflating a balloon inside his airway to break any scar tissue, leave it for a few minutes, and then deflate and remove it).

Surgery rescheduled!

Thank you all for the prayers! We decided to reschedule the surgery yesterday. Carson is feeling better and acts totally normal but still has a runny nose and cough. After talking to multiple people, no one could say with much confidence that surgery would be a 'go ahead.' And we didn't want to make the trip only to be sent home. So we decided to postpone surgery...it was rescheduled for December 9th. As much as we wanted to get this next step under Carson's belt, I think this is best. Just praying Carson is healthy in December...stay warm if you are in this cold front and if you aren't...lucky you...enjoy for us!