Oh, the waiting...

Well, we are one week out from the rescheduled surgery (January 4th)...and I'm pretty sure Carson has the cold now that Brody and I had last week. Ugh! We were so careful to avoid germs and lots of people for the past week even with the holidays but such is life. It is nearly impossible to keep Brody out of Carson and Kellen's faces and vice versa. We have not cancelled surgery yet but after the last trip, Preston and I don't plan to go if Carson is not 100%. So prayers for guidance and health please as we wait (& trust) for the perfect timing of this surgery.

While I am on here, I have to share a sweet story. I was in my bathroom on Christmas Eve and could hear Kellen and Carson talking in the other room. Kellen hollered at Carson and then I heard Kellen go on to tell Carson, "Carson, I am so glad you are alive. Who else would I play/do all these legos with?""I am so glad that thing [teratoma] didn't make you die."
My heart melted and I was kinda in shock...it's not like these boys talk about their emotions much!

And, as am I...I am so glad Carson [& Kellen] are alive! We hope you all had a wonderful Christmas full of love...and joy...and hope!

Wait for the LORD; be strong and take heart and wait for the LORD.

Psalm 27:14

Back home.

I didn't make it on here last night...sleep got the best of me. We are back home...things didn't go as planned.

But when things don't go as planned...get ice cream!!

When they doctors did the scope (at the beginning of surgery), they said his upper airway was just a little swollen/inflamed and they want it to be at its best before proceeding so we’ve rescheduled for January. January 4th actually. It was disappointing to say the least but also an answer to prayer that they took a look and had Carson’s best interest in mind. The worst part is Carson had to go through the anesthesia process which causes the most anxiety for him...especially this time. But he bounced right back in true Carson form!

Part of that big smile is because he knew Uncle James would be jealous of his raspberry ice cream : )

It is hard to figure out [in fact I can't] why we had to put Carson through the whole anesthesia process when it is traumatic for him. I prayed (along with so many others) for clear direction and all the signs pointed towards going. Although I knew he wasn't at his absolute best, I thought he was likely good enough. So while I can't figure it out and it hurts me to see Carson have to go through unnecessary unpleasantries, we will continue to trust that it wasn't all in vain...after all, understanding doesn't always bring peace. We know this is all part of God's plan. We did get some clarification from the doctors on what their plan is and it was nice to hear Dr. Cotton say...'there is just a little bit more that needs to be done' [before the trach can come out].

We continue to hold onto hope and are praying that January 4th is the day!! We will have several weeks out of school so maybe Carson will be feeling GREAT!

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

Isaiah 55:8-9

Next stop...Cincinnati

We are heading out in the morning (Thursday) for Cincinnati. This is the first trip in a long time (& first big surgery) that Kellen will not be with Carson [& all of us]. My momma heart is breaking just a bit because it's the longest I'll have been without seeing Kellen. I think he is going to have an absolute blast staying with Mimi & Papa (Preston's parents) but the rest of us will miss him greatly!

My mom is coming with us to watch Brody while I'm over at the hospital. I am anxious to have this surgery and the hospital stay behind us. I KNOW God is with Carson and all of us but I still have fears about what is in store...that seem bigger at times than others.

I'm going to make this short (because I need to get to bed) and hope to update along the way.

Specific prayer requests
1. For guidance and clear thought for the surgeons...we actually feel good about Carson going into this surgery but he did have a short lived fever a week ago with subsequent cold symptoms. He looks good overall now but still has a little bit of sinus drainage that causes more coughing than normal. The nurse practitioner from Dr. Cotton's office called me today asking more about this illness and just letting me know if we wanted an out to reschedule...she was giving me one because one, this surgery is totally elective, and two we know Carson's past history...that he has a complicated airway so we want him at the best possible point going into this surgery. The call caused me to fret but after talking with Preston (& getting my mom's insight)...Preston and I decided it was best to go ahead and go. We will definitely let the doctors know that if they get in there & his airway doesn't look great...we are totally fine with rescheduling. So that's why we need extra prayers in this area...we really want to get this surgery done now but I do want it to be the best timing!
2. Peace & strength for Carson as he goes through the anesthesia process and the hospital stay.
3. Peace & strength for me (& Preston) to journey with Carson while trusting God & leaving Carson in God's most capable hands.
4. Healing of Carson's airway in the days, weeks, months ahead and a successful surgery!
5. For Kellen while he is away from us that everything goes smoothly and he has a great time!
6. Safety on the roads

The reconstruction is scheduled for 7:30 am ET and should last about 6 hours. I would explain more of what they are doing but I'm not sure I really understand. Trusting in the doctors' hands and the guidance of God on them!

'Thank you' never seems adequate but we so very much appreciate all the love and support and the prayers that are said on our families' behalf. It really leaves me speechless...

Be still and know that I am God

Psalm 46:10

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!