SEVEN

Kellen and Carson…Wow…SEVEN!!! How are we already here?!? Happy birthday boys! I am so thankful that we’ve been blessed to have you for seven years and I pray many, many more to come!

I was at a bible study the other night with several girls…several that I just met that night, a couple friends of several years but no one that was around seven years ago. One asked me to explain the medical journey that Carson (& Kellen) have been on. I started in with finding the teratoma in utero, our weekly visits to St. Louis until delivery, the EXIT procedure, the teratoma resection and trach placement three days later. How we found out later that many doctors and nurses didn’t think Carson would live. I went on to say that Carson has had 25+ surgeries, with two major airway reconstructions and another one next month. I briefly described this upcoming surgery with some tears. I explained how strong Carson has always been and how my faith has been strengthened…BUT as I was talking, I just didn’t feel like I was doing Carson’s journey [our journey] justice.

It’s hard to put into words the last seven and a half years…from finding out we were having twins as newlyweds, that one had a cervical teratoma, to nights in the NICU (for four months), to bringing a baby home to rural Missouri with a trach and on oxygen, to a couple really scary trach related situations, to Carson’s silent screams and tears shed EVERY time we did trach care, to the countless (in home) nursing stories that you almost have to be there to believe, to Preston (or another family member) staying up through the night for the first several months (even though we had a nurse there also) just to make sure Carson made it through the night safely, to the number of family members that came to help on a regular basis, rearranging their own lives to help us out. The hundreds of people that prayed along with us. Not to mention how many nurses, doctors, and therapists that we have come to know…many became friends. The hours upon hours that we have worked on eating (day after day) with Carson…the frustration that it caused on both sides (& still does regularly). The numerous trips to St. Louis and Cincinnati for appointments and surgeries. Anesthesia almost 30 times [30 times in 7 years]. The hospital stays. The tears that have been cried, the smiles that have been shared, the prayers that have been said, the triumphs and the disappointments. But always, the hope. How do you put all that into words?? I’m not really sure you can, especially not in a couple minutes. But it’s there, it’s Carson and Kellen’s beginnings even if you can’t tell it by looking at them now. It has shaped them.

It has changed us. And it continues to.

Many of the memories and emotions have faded (thank God) but I hope I never forget the miracles, how God has shown up even when I didn’t feel him, and just how far we have come. I hope at some point, Carson and Kellen can both own their part in the journey…that they may just have a little insight into how amazing they are, how strong and brave and resilient!

Happy birthday you two! May you always shine bright, love big, and have each other’s backs!

SIX

FIVE

FOUR

THREE

TWO

ONE

First family photo all together <3

Just before the teratoma was removed...my oh my, glad these days are past.

More details

Ok, so clearly this is much delayed…but life happens. This time it meant many hours on the phone figuring out issues with Carson’s insurance and a torn ACL playing volleyball [for me] with subsequent visits to figure out what needs to be done. Inconvenient and frustrating more than anything.

So, Carson…our brave, little fighter that just goes with the flow, never gets in a hurry and takes life as it comes. He agreed that he would have surgery [to get his trach out so he can go underwater]. He doesn’t want another surgery anymore than I want him to and yet, he’ll do it (& hopefully his smile will return quickly). He is scheduled for a supraglottal reconstruction (about 6 hours), December 7^th with a 10 day hospital stay expected afterwards. Prayers we are healthy then! 

That smile <3

At magician's kit at Ronald McDonald House. How can you help but smile!!!

I’m not sure where to even start…the news from Cincinnati was disappointing to me on many different levels. Not that I really expected him to get his trach out right now, I wasn’t expecting the need for another major surgery. In fact, I really thought we were done with major surgeries, maybe time was needed to allow more growth but not another big surgery. So, that was the first blow. Then, they told us he would need a t-tube for six months following surgery…and all the horrors of the last time he had a t tube (mainly the time in the hospital) came flooding back. It was definitely one of the hardest hospital stays for me…to see Carson in pain and then to have to do bicarb (a necessary thing) and cause more discomfort to him, all while holding him down is more than I care to remember or have to relive. Then, to know he will only be able to whisper and we will need tube feedings again (something he has worked so hard to get rid of) just hurt my heart a little more. And it continued, this next surgery is really the last shot at getting his trach out and there are no guarantees that this surgery will even work. That may be the hardest to swallow. There are no guarantees. I’ve NEVER thought he would have his trach for life. In fact, the doctors thought it would be out a year or more ago.

I cried many quiet tears on the way home from Cincinnati [and some since then & I’m sure there will be more], at the unfairness of it all, at the pain Carson will have to endure [AGAIN], the frustration that I’m sure will come with only being able to whisper, some in anger that a trach free life is still not in God’s plan for Carson at this point and just the simple fact that the journey God has for his life is SO dang hard!

BUT…

Sometimes it’s just necessary to face your fears and try to accept them. My fear…Carson will always have his trach…that he will not get to go underwater like he wants. And while I can work through that fear and I see Carson right now and he is healthy and happy WITH a trach…AND I can find a ton of blessings in this past trip…sometimes, it just sucks because the outcome at this point was not what I wanted for Carson and frankly, God’s plan for Carson’s life could very well include a trach forever. It’s HARD and accepting those possibilities and putting my full trust in God’s plan is an ongoing process.

But I do want to share some of the answered prayers and blessings of this past trip…

1.     Carson WAS healthy!!! Woohoo!

2.     Rain was forecasted the whole way up to Cincinnati but we had dry spells at the two places we wanted to stop…the skate park in Paducah and the walking bridge in Louisville.

3.     Carson made it through the sleep study and anesthesia for the scope with very little anxiety and no tears.

4.     Again, we had rain most of the time we were there but there was a break on the day we needed it to go to the zoo! (We got to see the star of the zoo…a baby hippo named Fiona)

5.     During the scope, his airway reflected his health and his lungs looked great! (giving the doctors a good look at his airway)

6.     The doctors spent TIME with us afterwards to answer questions and we met the doctor that will be taking over for Dr. Cotton when he retires. (Preston and I both liked him.)

7.     They have a plan for Carson and the doctors are optimistic that it will be successful. [Side note: the areas of the past two reconstructions look great!]

8.     On the way home, our tire started losing air about an hour and a half from home but after airing it up, we were able to make it home without needing to change a tire. Praise Hands! [especially when it is midnight]

So, thank you for your prayers, so many were answered!!! They lift us up and carry us when we are feeling low. God is working…he always is!

A couple things God has put in my path, at just the right time, when I needed it the most…

I turned on Pandora the day after returning from Cincinnati (totally random songs except you can pick the genre) and the FIRST two songs

I Have This Hope by Tenth Avenue North (already one of my favs)

As I walk this great unknown
Questions come and questions go
Was there purpose for the pain?
Did I cry these tears in vain?

I don't want to live in fear
I want to trust that You are near
Trust Your grace can be seen
In both triumph and tragedy

I have this hope
In the depth of my soul
In the flood or the fire
You're with me and You won't let go

Just Be Held by Casting Crowns

So when you're on your knees and answers seem so far away
You're not alone, stop holding on and just be held
Your world's not falling apart, it's falling into place
I'm on the throne, stop holding on and just be held

Perspective changers

1.     The day we got home, after all the rain, the afternoon ended up being beautiful so I took the boys and their bikes to the park. I left we two happy boys that were soaked from riding through the puddles!

Reminder: Carson is happy & healthy WITH a trach.

2.     There was a terrible tragedy in Dexter and a young husband/dad was killed.  

      Reminder: The often overlooked, yet simple and biggest blessing … I HAVE Carson (& Preston).

And last, I saw Aunt Vickie just today (she hadn’t heard the report from Cincinnati yet). As I was telling her about some of the disappointments, specifically that there are no guarantees that this surgery will be successful in getting the trach out, she said, “Well, that’s where our prayers come in!” And that’s so true, where the medical expertise stops, we can see prayers & God’s handiwork the most! (Need I remind myself of Carson and Kellen’s beginnings!)

This was given to me after C & K were born & sits in their room. So true!
“Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.” Romans 5:3-5

Paducah skate park!

Big Four Bridge in Louisville

Cincinnati Zoo

Sleep study ready...there's a rockstar!

This picture <3 <3 <3

Elephant Rocks the weekend after we got home

It's a long journey...

I'm gonna make this short and hope to get on here tomorrow to fill in details. We appreciate all the thoughts and prayers so much but I'm still processing and I need to get some sleep.

First, Carson did AMAZING in all of it...he was so brave and cooperative despite none of the tests/procedures being easy or enjoyable. We were really optimistic after the sleep study because they left the cap on all night but that was short lived. After the scope, we found out another MAJOR surgery is needed before he'll be ready to have the trach out, if at all. Not only is it a major surgery but he will need a t tube for 6 months after that (He had a t tube a couple years ago for 3 months...he can only whisper while he has it and eating/drinking is very difficult so we will be back to largely tube feedings and you have to do bicarbonate twice daily with in office scopes monthly...no fun, no fun, no fun!) There are no guarantees that the surgery will be successful but there is tissue above his vocal cords that continues to obstruct his airway (more problemsome at night) and has to be removed.
Growth/time does not effect this area...so timing of the surgery is up to us. I will be calling soon to check on scheduling...but we would like to do it sooner rather than later if it has to be done.

I'll try to fill in more details soon...again, thanks for going on this journey with us. I know God's plan is good for Carson, I just wish it was a little easier.

"I have this hope, in the depth of my soul..."

Cincinnati bound!

First miracle...we have all stayed healthy (at least so far)!! I did keep Carson out of school Thursday and Friday to help prevent exposure.So we are heading to Cincinnati today. Carson's sleep study is Monday night and his scope will be Wednesday morning at 10:15 am ET. I will update as I am able but thank you for the many prayers for safe travels, for Carson's comfort and healing.

Carson wants to go to the zoo and a certain park...forecast says RAIN : ( but we are praying for a few breaks so hopefully we can do these activities!

Love to all!

Germs...STAY AWAY!

Oh my word...how has it been three MONTHS since I posted anything!!!! Life is full right now and Brody just keeps getting more mobile and makes things more interesting. I've realized that I seem to have less and less pictures of our day to day simply because I'm too busy chasing Brody around! Carson and Kellen are back to school (1st grade) and are having good years so far EXCEPT all those school germs! I've had one child home or at the doctor the last 3-4 weeks...ugggghhhh! But...so far, so good this week. In fact, that's where I could use a lot of prayers. Carson is scheduled to have a sleep study next Monday, September 24th and then a scope with pulmonology and ENT September 26th in Cincinnati. I do not want to go or put Carson through all of it unless he is healthy (so we can actually get some beneficial information). We will leave Sunday but I am debating keeping him home from school Friday and possibly Thursday to decrease the number of germs he comes into contact with and so if he is getting sick or going to get sick from school germs, hopefully we would know before we head out. Its so hard to know but on top of the fact that we haven't been to Cincinnati in 9 months now and last time, we really got little to no information, I also asked and found out that Dr. Cotton (ENT...world renowned and Carson's doctor) is retiring within the year. Although, I wasn't totally surprised, (he is 77 years old) I also would like to see him at least one more time before he retires.

Please keep us in your prayers for all the decisions to be made, for healing of Carson's airway, and of course, for his peace of mind and resilience. I will try to update when I know if we are going for sure. Carson has continued to keep up his weight without any supplemental tube feedings (for over 6 months now)!!!!

Thank you, as always, for all the prayers!! You guys are awesome!!

Wacky tacky spirit day at school!

Rescheduled

I wanted to jump on here [real quick] to update you on the chaos of the Clark household...summer is in full swing and I'm just hanging on for dear life  : ) It definitely is an adjustment (a good one, but an adjustment) having all three boys at home again ALL day (& you can definitely tell it when you walk in our home...ahhhhhh!)

We were supposed to be in Cincinnati today preparing for a sleep study tonight and then a scope with pulmonology and ENT on Wednesday BUT we aren't. Carson has had a cough since the beginning of May...he's felt fine but had a pretty productive and irritating cough for a long time. Preston and I decided that it wasn't worth making the trip and more importantly, putting Carson through all of that only to come home with a similar story as last time..."His airway is inflamed...he must be sick/getting sick." I was totally at peace with the decision to reschedule (thinking we would reschedule sometime in July). That's where the hiccup came in...they are scheduling out to SEPTEMBER!!! Not at all my plan...school will have already started, that's another THREE months with no more answers or plans and Kellen will likely not get to go with us because of school. That threw me for a little bit of a loop...I was frustrated and disappointed. BUT then it was time to refocus & find the good. So...we have our whole summer free!!! So instead of being in Cincinnati today...Ellie (my niece) & Nana are here...they rode scooters, went 'swimming' at Mimi & Papa's, and Carson and Kellen are taking a nap right now in preparation for a late night baseball game. I don't have a date yet for these procedures but will let you all know once I do.

Real quick, in other news...Carson has NOT used his feeding tube since mid February & he has gained weight (it hasn't been without its struggles but he has done it on his own!!) That is a GREAT BIG step!!
He was also discharged from the endocrinologist's care. We thought he would be on Synthyroid to regulate his thyroid levels for the entirety of his life but last year, the doctor told us to stop the medication because he believed there must be at least a small part of his thyroid left. The doctor was correct...his thyroid levels have leveled off and he has maintained normal levels without medication. So, when they resected the teratoma so very long ago, despite not really knowing what they were taking with the tumor because of the massive amounts of blood that was lost...at least a small part of his thyroid was preserved. Another instance of God's handiwork in the midst of it all. While the medication wasn't a big deal...Carson will take one less every day : )
Carson's cough has improved now, so I am thankful for that! Hoping and praying for a great, healthy summer. We head to the beach next week & Carson and Kellen can't wait!!

A couple pictures from Brody's one year session!

 P.S. When I say 'swimming'...we now let Carson get in the pool since his trach is capped and he is tall enough to stand in the shallow end and keep his stoma well above the water level. This is a new favorite activity for Carson and Kellen and Carson is a good sport & has a great time, even though he is limited greatly in what he can do in the pool. But our superhero Carson, had his first moment [i think] of realizing that it is his trach that limits him. One day after swimming, as he was drying off, he turned to me, "Mom, I wish I didn't have a trach." I responded in agreement & said a couple other things but then he ran off to do the next thing [ride the golf cart with Mimi]. We can realize our struggles & name them & even sit with the unfairness but something I learn from Carson over and over is the fact, he doesn't stay there long...he gets back to living life!!!

Hope you all have a fantastic summer!! Love and hugs!

Farewell Mrs. Needle

Mrs. Needle (aka Carson's feeding pole) has been a part of the family (& a fixture in our dining/breakfast area) for 6 years. She has stubbed toes (with her long legs & wheels that stick out). She's caused messes. She's been used as a walking aid (by some of our early nurses). She alerts you if you've forgotten her & left her on (by her beeping). She's traveled the country with us. She's recently been tipped over numerous times by Brody. She was needed & very useful BUT she has NOT been used in one month. It is time for her to leave. Carson escorted Mrs. Needle out of our eating area this past weekend. Carson said...See ya later, Mrs. Needle!!

This was the beginning of our procession
down stairs with the feeding pole

This was a monumental event for Carson & our family. Mrs. Needle is the name we gave the tube feeding pole early on. She was used 6x a day when we first came home from the hospital to give Carson bolus feeds through his G-button every 4 hours around the clock. Over the past 6 years, Carson has worked on eating & drinking orally and we have gradually cut back volume and number of feeds given through his feeding tube. We've been down to one (250 Calorie) tube feeding at dinner for quite awhile but I've always been too chicken to cut it out completely and see if Carson could make up for those calories by mouth. [Yes, he is capable of drinking those calories but they idea for him is to EAT more food. Kids can get in a habit of drinking their calories and then never eat more. He does get two 'shakes' a day - with added powder to his milk to increase calories but he was drinking those even with the tube feeding.] Well, a little over a month ago we accidentally forgot his tube feeding on two separate evenings over a weekend. Preston and I just decided to go with it and give it a try. {Ahem...God works in mysterious ways to give us those little nudges sometimes ; )}

SOOOO...Carson has not had a tube feeding in over a month and has actually GAINED weight!!! We are so happy & excited for him. We still have alot to work on but this is a huge step! There is alot of learned behavior and physical limitations that still make mealtimes hard but we will celebrate this step.  My original plan when we thought about cutting out the tube feedings was to put the ball totally in Carson's court...letting him decide how much he ate; however, I got nervous that he didn't eat enough on a regular basis that it might affect his behavior or attentiveness at school. So, we are still doing alot of encouraging during some mealtimes & most meals take longer than we'd like but for now...I THINK this is the best plan. Once summer hits, I will feel more comfortable letting him have more control without adverse effects at school. We'll see...I admittedly have a very hard time letting go of the reins!


I didn't realize how long it had been since I posted anything...Carson & Kellen continue to do well in school. We had a huge miracle in that Carson did not miss a single day of school, due to illness, during the third quarter. WOW!! After, such a rough fall of sicknesses...I was concerned I might need to keep him home through the worst of the sick season (I'm still holding my breath a little...but am SO thankful!) We did make a trip out to Colorado in February & both boys got to try snow skiing & tubing for the first time. They enjoyed both and we all had a wonderful time, even with a 16 hour drive each way!

This was SOOO much fun!

Give Brody a few years & I'm sure he'll be out there too.

I have scheduled Carson's next set of appointments. He will have another sleep study June 18th & then a scope on June 20th. I'm praying for good news but also for guidance for the doctors and their willingness to take time & explain the next steps/options, etc. We aren't expecting much from this appointment but I am hoping that his airway at least looks back to his baseline (less inflamed than the December scope). And prayers for Carson's peace of mind through it all...he told me the other day that the two things he doesn't like about surgeries are being put to sleep (induction of anesthesia) & getting all the probes put on his head/face for the sleep study. Unfortunately, he'll have to do both this time but we will also have some spare time to focus on FUN! Last thing...you can also be praying I am able to surrender Carson & the outcome into God's capable hands knowing he has a good, good plan for Carson and to leave any of my expectations out.

A few more recent pictures  : )

I know I'm a bit biased but I LOVE these three handsome boys (& their love for each other)!

First Easter! (The eggs were everwhere shortly after this picture ; )

Carson's Easter party at school

Kellen's party! Preston took time out of his very busy day to surprise the boys : )