Our next adventure...

Hoping everyone had as wonderful a holiday season as we did! We were blessed with lots of time with family & friends! And now on to announce our next adventure....

Carson and Kellen will be big brothers to another little.... BOY!!!!

Just a little excited!

We (all of us) are over the moon excited and feel so incredibly blessed! Already, I feel like this pregnancy holds a little more significance and awe for me...we've known miscarriages, we've known bad news at ultrasounds (more times than I can count), we know there are no promises that this one will be healthy or an easy journey but the fact that we have the chance to bring another life into this world...is a blessing. We know that no matter what happens, we will survive with God's (and our huge support system's) help and that every life touches & changes our lives forever! I think my heart warms & grows a little EVERY time I feel this little one move inside me.

Your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be. Psalm 139:16

We are praying for a healthy baby & pregnancy. We will be seeing my high risk OB (Dr. Vlastos) next month to get a little more clarification on method and timing of delivery. There is some clarification needed due to the way the boys had to be delivered & a chance we may have to deliver early with this one. I do know that this one will have to be a c-section and I can NOT go into labor. So lots of details to pray for...and a lot that can only be left in God's hands. And while that is SO EASY to say, it is much harder to always take to heart. We are due in June...so almost halfway there!

It's BLUE!

We had a lot of fun with the reveal. We used a balloon filled with confetti. None of us knew prior to popping the balloon whether it was a girl or boy. However, we were all shocked to see blue because I was certain this one was a girl. (This pregnancy has been so different from the boys') Both Carson and Kellen were rooting for a girl also but they are just as excited now for a brother! Add another boy and leave me even more outnumbered : )

And next up, we are scheduled to go to Cincinnati for Carson's surgery January 30th. I'm praying we can stay healthy (RSV, the flu, and strep are going around). They will be doing a supraglottalplasty (basically removing tissue/opening up Carson's airway ABOVE his voicebox). It will require at least an overnight stay but should not be anywhere near as invasive as his reconstructive surgeries. Thank you for the many prayers that go up for Carson. He is such a trooper but I continue to pray for protection over him for not only the surgery itself, but his mental and emotional health also, as he goes through yet another surgery.

The LORD himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged." Deuteronomy 31:8

We are back and ready for Christmas!

Well, we are back home...once again, sorry its taken awhile to get an update done. I'm sure many can relate, getting back from a trip & your house becomes a whirlwind, plus throw in Christmas prep & it's a real tornado!!

Carson had the sleep study done on Sunday evening...we were so proud of him!! He was not a fan of the 100 probes (maybe not 100 but it was ALOT) placed on his head, chest, & legs, the straps & probes. But he did well getting them all on (it took almost an hour just to get ALL of them in place)! And although he got teary eyed a couple times, he stayed as relaxed as possible and went to sleep in a relatively short amount of time. Let me tell you, I have no idea how they expect you 'to sleep like at home' when you feel strapped down to the bed & machines. He especially hated the nasal cannula sensor in his nose! Preston stayed with him over night and he said Carson did pretty good but that the sleep tech uncapped him in the early morning hours. We didn't get full results until Tuesday. Carson had about a dozen partial obstructive events while he was capped. His index number given (from results) was 2 (normal is 1.5 or less). I think alot of it is positional...they uncapped him because he seemed to be working a little too hard to get adequate breaths. But all in all, the doctors were fine with the results & didn't see anything that was a game changer.

Wednesday morning, he had a scope with the pulmonologist and ENT.  They saw basically the same thing as last time but they spent more time looking and discussing. The areas of narrowing/obstruction are above his vocal cords (the area of reconstruction looks great!). I was hoping they would do any intervention needed while he was out this time but they want us to schedule the next surgery in the next couple months. There are two areas that they want to work on...one area is just above the vocal cords and they want to suture this tissue back and the other area is tissue just above his epiglottis that they will remove with a laser.

While, I wish we didn't have any more surgeries....all of this info is consistent with the sleep study and what we see during the day with noisy breathing during normal activity. However, like the doctor stated, 'this is nothing that you would find in a textbook.' 'We are making our best educated guesses.' It shouldn't surprise me that Carson is so unique but it shows HOW unique his airway is when you hear this from a doctor who has been doing reconstructions for 30-40 years & sees patients from all over the world. As a couple friends said 'Carson is blazing the trail and opening the path to healing for others as well.'

As it often happens, we get through all of Carson's appointments & surgeries and as we head back home, Carson is usually asleep in the car (sleeping off anesthesia) and I dissolve in tears. We stay strong and are so thankful for being at Cincinnati Children's with the immense experience that their team brings but golly, I wish Carson could just have a break from all of it. As I look at his sweet face in the car, that resting face of an angel...my momma heart breaks. So we take it one surgery at a time & I try to keep my wishful timeline out of my head (the one that gets his trach out before school starts & before summer). Because all I really need to do is stay in the moment that we are in. Carson will be fine, trach or no trach, as he shows us time and time again. I sometimes wish that we could have an in depth conversation about how he deals with the pain & suffering and that he could tell me, he understands why we are doing it all and he is fine. Ha!...what am I thinking...ONE, no male in my family is much of a talker and TWO, while Carson doesn't TELL me he understands and that he is okay, he SHOWS me in his actions and how he may cry and get mad in the moment but then he is over it and on to the next 'normal' 5 year old activity.

Thank you so incredibly much for the prayers that sustain us in the long, tiring hours of hospital trips! We hope you all have a very merry Christmas...Carson and Kellen are SUPER pumped!

An indoor playground...such a life saver on the COLD days!

Festival of Lights at the Zoo

Holy Moly...we are headed back to Cincinnati

Holy moly...its been over two months! We. are. still. alive. And we are headed back to Cincinnati tomorrow for the next round of procedures & tests. It's been quite the past week and a half. But before I tell that story...why are we going to Cincinnati?

Sunday night, Carson will have a sleep study in the hospital while his trach is capped. Prayers that he can actually get a good night's rest with the 100 stickers, wires, straps, etc. they put on you for a sleep study.
Tuesday afternoon, he has a clinic appointment with the pulmonologist. Praying that the sleep study results are in by the appointment so we can discuss them and that we get some good answers to several questions we have about the stridor and the apparent increased work of breathing that normal play/running activities cause Carson (not that it slows him down but I want him to have energy for other things as well)
Wednesday morning (9:30 am ET) Rigid and flexible bronchoscopy with ENT & pulmonology to take a look at his airway and I'm praying they will do any intervention that is necessary, if any is indicated by the sleep study or the appt. (if it is needed)
Then return home for CHRISTMAS!! That's the plan but it has been known to change ; )

Speaking of change...last week I got a message from Cincinnati telling me I needed to call to reschedule ALL of Carson's appointments/surgeries because his insurance's enrollment with the hospital as whole had expired and the necessary paperwork would take 30-45 days. So I calmly...ha, my blood pressure went through the roof (I'm sure) when I got the message. I took a few breaths and called them back to ask what in the world was going on? : ) We've had these appointments for over two months, how are you just now catching this?!? Anyways, not only did Cincinnati Children's agree to try to get the necessary paperwork expedited (as it was their mistake) but we also contacted our Missouri representative to see if they could help. Well, there was a big lesson in this for me...as the election is still somewhat fresh and I'd been reminded of my general dislike for politicians. Who would it be that helped us out, allowing us to continue with our planned appointments?? None other than a politician!! Good reminder...there are so many good people out there...politicians, police officers, neighbors, etc. There is a lot of good in this world so don't let the bad ruin it! AND...prayer does mighty things! When I called Cincinnati two days ago to make sure it was a 'go' on their end also, the lady I was speaking to (who doesn't know me) said "You are very lucky. It was like everyone was on Team Carson Clark!" {But of course, I thought} She only made one call and from there everyone was working to get the insurance stuff figured out and keep Carson's appointments the same : )

In other news...Carson and Kellen are now FIVE!! Where have the years gone?!? They had a wonderful birthday and have really enjoyed the Christmas season so far. They are pumped for Santa!
Thank you all for the many prayers and thoughts you've sent our way...we've seen mighty miracles and hope that this may be the year we get rid of the trach! I will try to update from Cincinnati...we are staying at the Ronald McDonald House and the boys have been looking forward to it for the past several weeks. It's going to be COLD so we will get to take full advantage of all they enjoy about the RMH (inside).

5th birthday party fun {at the expense of Poppy & PaPa}

Our big five year olds!

Those. Smiles.

My heart melts.

And our love continues to grow.

This was from pictures we had taken at Mom & Dad's

They were done with pictures by this point : )

Capping trial success!

We are back home from a {longer than planned} trip to Cincinnati. But we got good news!

We left last Thursday for a planned scope on Friday (Sept 30th). ENT did a rigid scope and pulmonology did a flexibly bronchoscopy. Carson did well...we had them give him Versed prior to going to the induction room...he was VERY relaxed...drooling, relaxed : )! The results: there is some collapse just above his vocal cords (at an area or structures called the false cords). But Dr. Cotton felt that it wasn't enough to warrant another surgery unless Carson shows he needs it. So Dr. Cotton was ready to attempt capping trials (this means that Carson's trach is plugged off with a little white cap...so the trach is not being used, only there for safety or emergencies). We were given the choice to come back to do the trials or just stay and do them over the weekend. We opted to stay...long story short, Carson did really well (day & night) and didn't desat at all. So we came home Monday with instructions to cap his trach during the day. They want us to return in 2-3 months for a sleep study with his trach capped (to make sure there isn't any apnea going on) & another scope. If that were to go well, we would go another couple months capping his trach day & night before decannulating (taking his trach out) next spring...OH. MY. WORD! The fact that decannulation has even been mentioned in the near future is crazy to me {exciting, scary, unbelievable}.

Of course, there are a million scenarios going on in my head. I am super excited but I do have some questions & hesitations. Hopefully they will be answered in time. Part of the reason they are waiting up to 6 months to decannulate is to see how Carson does with sicknesses. My other big concern is that there is some amount of obstruction at the level of the false cords...they saw it with the flexible scope and we hear it when Carson exerts himself (the noisy breathing, which is slightly worse with it capped) and some snoring while he was capped at night in the hospital. So although he doesn't desat at these different times, I don't want to cause extra stress on his body from increased work of breathing. On the flip side, if a surgery is indicated at the false cord level...it always increases his risk of aspiration when the airway is opened up (& he is already at an increased risk because one of his vocal cords is paralyzed from the teratoma removal). Okay, that's some jumbled blabbering but that's kind of how it runs through my head : ) With all that said, I am trying to entrust (once again) all the details to Jesus (& in the skill/experience of these doctors). Prayers always for healing of Carson's airway but also for guidance for the doctors & for us, as to the questions to ask & the steps to take. So while there are many hoops to jump through before the trach can come up & possibilities that the course may change, this weekend was a huge step in the right direction! Hooray!

This little boy's heart is SO big! As we headed to the hospital for yet another scope (4th in 2 months), his thought was for Kellen. He wanted to get him a matching dolphin like he had gotten a different time😊. No dolphins but he did get matching dogs. These little 'gifts' from same day surgery may seem insignificant to me but they made his morning!😍

Since we were going to be in the area, Uncle Josh hooked us up with some tickets to the horse races at Churchill Downs. Very neat!

At one of our favorite parks outside Cincinnati

This hospital stay was so different...no pain, no pokes, not even an IV, just some monitors. So more time for smiles, fun, and crafts!

After the first night of capping his trach. He did GREAT!

We even got to leave the floor and go try out the play area!

Running the halls...gotta find some way to get all that energy out!

I did ask them to stop after I took the pictures ; )

On our way home, thank goodness for Nana to assist in keeping them busy!

Topped it off with a trip to the skate park in Paducah!

Preschool & stuff

I just tucked all 3 of my boys in bed. Friday night special…Carson, Kellen and Preston all bunkin’ together. Carson and Kellen have been counting down the days since LAST Friday night : )

This was last weekend...LOVE!

Yesterday (Thursday) was a big day in the Clark household. Carson and Kellen went to their first day of Thursday school (a one day a week preschool). They both loved it!! In fact, Kellen asked if he could go today also : ). It is only 3 hours and I stayed in the building to be available in case of trach emergencies (& to observe snack time with Carson) but I hope it will be a positive step for them before they start Kindergarten next year. It was ironic that Thursday was also NICU Nurses’ Day…to think how far they have come from their NICU days. I never dreamed that Carson would still have a trach or that we would still be working on oral feedings but it is one of those times when looking back, I know it was God’s protection.

Boys will be boys!

They are in the blue class (they will be in different classes in K)

In the beginning, it would have been smothering for me, stifling my hope & joy, to imagine 5+ years stretched out ahead with a trach. Somewhere along the way, I remember talking with Preston and thinking we really need to just start living WITH the trach instead of always saying “When the trach comes out, then….” But, it’s been a continual process of staying in the moment and not getting too caught up in the future because when I get too far in the future the anxious thoughts and fears just begin to build. But isn’t that just what God wants from us, to stay in all of the current moments. He didn’t design our minds to be able to handle the many what ifs of the future. But being a person that likes to plan, plan, plan…it is so hard! Trying to find that balance of preparing and planning yet trusting & leaving the details in God’s hands.

So we will continue on…the flexible scope (pulmonology) & rigid bronchoscopy (ENT) is scheduled for Sept 30^th. Maybe we will head into October with a good plan & maybe some good news. This past year (actually almost a year ago exactly) we began the reconstruction process. It has been a journey…we counted recently and Carson had 10 different surgeries this past year alone. He continually amazes me because although that is WAY to many surgeries for a little boy to have to go through…it is not what he would tell you made up his past year. He would likely tell you about riding his scooter, his bike, playing with Kellen, going to the mountains and the beach, playing with his cousins, and the trips to Cincinnati…not the surgeries but the fun (the zoo, the craft room, the parks). I would take all the pain away for Carson if I could but I know God doesn’t make mistakes, he created Carson for this exact purpose and I pray that he sees the strength and courage in himself that I see everyday. And speaking of God’s plan...he gave us twins. Kellen & Carson are each others comfort item. They don’t have blankies or bears they are really attached to…it’s the other person. And while I am the first to tell you that they are rather dependent on each other (& I know there are pitfalls of that), it is also rather reassuring for my heart. There is no doubt in my mind that they will flourish as individuals, they have the rest of their lives for that, but for now, I love that they look to each for encouragement and confidence when they get in unknown territory.

“I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.” Psalm 139:14-16

SDC with the gang

Kellen conquering the dome!

Made for two??   Not quite!

Our handsome boys at Meredith's birthday party (they loved all the little girls ; )

Our day to day...

Off to fight crime...ha! or just race to the post.

Time for 'normal' fun

We are back home and I wanted to get a quick update done before we get busy on this holiday weekend. The trip was a quick one...we had a blast on the way up to Cincinnati & enjoyed the beautiful weather.

Beautiful weather + first time at a skate park = "the best day ever"

And then got the surgery out of the way Friday morning and buzzed right back home. Dr. Cotton was still pleased overall with the airway. The area of concern is ABOVE the voicebox (an area that has not been operated on yet)...although his airway 'sizes' nicely this area is floppy & seems to collapse  (which would explain the stridor & noisy breathing). This area of concern has been mentioned before, we were just hoping that the reconstructions would possibly help open it up also.

So, good news...there was no new granulation tissue in his airway and the portion of his airway that has been reconstructed looks good (which was one of my worst case scenarios I drummed up). Not so good news...there is a chance that another invasive surgery will be needed and we have to go back yet again in a month. Next scope (in a month -ish) will involve pulmonology, along with the ENT, to get a better idea of the dynamics of Carson's airway and the functionality (whether or not his airway is collapsing). Pulmonology can get a better feel for this because they use a flexible scope (instead of a rigid bronchoscope). I wish they could have just done this while we were there since they already knew about the stridor BUT they didn't...so we will return. I am praying that somehow we may not need another major surgery but also praying for sound decision making and peace of mind for Carson.

I hate all these surgeries back to back because it doesn't give Carson time to forget the more unpleasant pieces. He really doesn't like the gas that they put him to sleep with...when he knows that is coming up, he starts to get anxious, his belly hurts, etc. While this usually only happens RIGHT before anesthesia begins (in the induction room - because Cincinnati is AWESOME and they let the parents be with the child until they actually are asleep)...now, it starts happening a little sooner and the symptoms are a bit worse (throwing up & more notable unease) because he has had so many surgeries close together. We did try giving Versed prior to the induction room this time and that did seem to help some.

Thank you, thank you, for the many, many prayers! We feel them.

Have a wonderful Labor Day!

On the road again...

We head back to Cincinnati tomorrow for another scope on Friday. It is scheduled for 8 AM (ET). We appreciate the prayers...the hope was that after this scope they would let us start capping his trach (which is one of the last steps before taking it out altogether). But how is it that as that glimmer at the end of the tunnel just barely starts peaking, you feel like you are put in slow motion, you become a bit more impatient, and any little set back feels a bit bigger. This past Friday, I finally put a name on a symptom of Carson's...STRIDOR...noisy breathing...something that you don't want to hear...meaning that there is something narrowing his upper airway, whether it is collapse of the airway, tissue blocking it, or something else. Although, Carson didn't & doesn't seem phased by it and doesn't seem to be in any sort of distress, I know it is not a good sign. I talked to the doctors last week in Cincinnati and they didn't feel like anything needed to be done early but of course were concerned about the whys?? also. So after about a day of being really disheartened, a bit anxious trying to stop all the worst case scenarios from playing through my head, and a whole lot of soul searching/praying...I got back up and realized, this isn't the end of the world. Carson is fine, he is still living each day to the fullest, he is carefree, and God's got this. I feel much more at peace although my hope is dimmed for this scope to be full of good news...I am praying for some answers as to what/why he has stridor and what can be done about it. Thank you all for journeying with us and carrying us in your prayers.

Those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint. 

Isaiah 40:31

Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today...The Lord will fight for you; you need only to be still.

Exodus 14:13-14