11/11 was HIS day…again

November 11th is always a day we celebrate because it’s the day Carson’s teratoma was removed and his chance at life became real. 11 years ago now! Also, officially when he got his trach. 

This year, 11/11 was HIS day again…Almost full circle  (closing up the stoma), the stars aligned (as the doctor said), prayers were answered that

1. The doctor agreed to squeeze in the stoma closure procedure during his follow up scopes even though there wasn’t technically OR time. And,
2. A bed was available. Hospitals are overloaded with sick kiddos right now so they've even had to cancel elective procedures but a bed happened to be open because another kiddo ended up not needing the stoma closure that was scheduled. So Carson got THAT bed! We had no idea that beds were so hard to come by but SO thankful it worked out!

If this hadn’t worked out, we would have had to wait until January to have his stoma closed (November 11th was the only day even slightly available). It already seems smaller, so praying it heals up quickly now!

Carson did great and I sometime will do a post just about the RMH but it seriously has made all the difference and helped Carson look FORWARD to going to Cincinnati!!!

Carson says his stoma is a little sore from the procedure but not awful! We will go back in 3 months for a follow up scope and a pulmonary appointment. So thankful to have this step done but still have a couple trips within the next year to make sure CPAP is doing it’s job and his airway is acclimating well to bring decannulated! So proud of Carson each and every trip!

Carson was pretty groggy & sleepy after the procedure

Puppet man...a craft was what got him going, otherwise I think he would have slept into the night

On our way out in the morning...never too early OR cold for ice cream!

ELEVEN & an update about decannulation

 NOVEMBER 8, 2022

Carson and Kellen are 11!!! We had a great day with them...it was beautiful weather, got to have a special breakfast, then after school and piano we spent about an hour playing on the high school football field, followed by a birthday dinner and dessert with the Clark side of the family. Just one of those slower evenings that are becoming more rare but one when it is easy to see and feel all the blessings and love!

We had a chance to reminisce with the boys about their birth and years past and you wonder how you are already here...with boys that are in the 5th grade, whose days are filled with school and often activities afterwards. With two boys who can keep up with or maybe even beat you in a 40-yd foot race! It's a heck of a ride and so thankful that I've got to go on it with these two! I know the days will only go faster and while I want to hang on to these times and slow everything down, I also know this is exactly where I want them to be. There were days that I dreamt of being able to go and play and just enjoy all things boy, that I would be cleaning out grass stains and mud out of Carson's clothes instead of vomit when it was so frequent! I continue to pray that these two find their passion in life, that they have friends and family that are close by to encourage them, that they always know God loves them, and that they know Him as friend and comforter!

This is 11!

I also wanted to get on here to do a better update from our October trip to Cincinnati and Carson's decannulation! He rocked it and we came home Thursday withOUT a trach, two days after he was decannulated and he went to school that Friday. Sooo many emotions but I think we all had just a little extra bounce in our step...it's been 11 years coming! Something we have prayed for, for ELEVEN years...something that we thought was going to happen at a year, then 5, then 8, then maybe not without the help of CPAP, then COVID happened.... With some really low lows and some high highs. The past 11 years have made me question so much of what I believe, given me a perspective that has totally changed my world, and has deepened my faith! It's been a journey and how do you put all those years & feelings into words?!?

I know I can't and yet I have had time to think and ponder and praise the Lord!! Now that its here and we are on this side, it is easy to find some blessings in Carson being 10 when he was decannulated. 

# 1: HE is excited! He gets it and understands what he gains by not having a trach (freedom in water). He is also able to understand some of the meaning and complexity of his journey!

# 2: As I think I've mentioned before, Carson was able to be part of the decision making process in terms of trading a trach for CPAP at night.

# 3: So many people came along side him and shared his {our} excitement...classmates and friends at school, people in the community & at church, family & friends, and all those that have prayed for him these past 11 years! It was heart warming to see and read all of the well wishes!

# 4: We were comfortable with the state of his airway and with CPAP (especially since we had CPAP for 6 months)

Many people commented about what a miracle it was that his trach was out. I agree, but honestly, I really feel like the miracle I saw was the fact Carson tolerates CPAP so well. I mean, he has NEVER pushed or thrown a fit about putting it on at night, not once. I would have put alot of money on it not being a smooth, easy transition and yet, it was! And although I can't say I love the machine (I still wish he didn't need it), the fact he's okay with it...makes it sooo much easier for me to accept!

Others have asked if it has changed his voice and while I think his voice is a little stronger, most of the volume of his voice has to do with only having one vocal cord (the nerve to the other vocal cord was severed during the surgery to remove the teratoma)...nothing to do with having a trach. 

Carson says he really doesn't notice anything different now that his trach is out except that he LOVES not having anything around his neck (the tie) and turtlenecks & some hoodies are much more comfortable!

It was a little bit of an odd feeling when what I had prayed for, for years, actually HAPPENED!! So, while we were all so excited to get the trach out, I also just felt a little bit 'lost'... I expected decannulation to be life changing when I used to dream and pray about it years ago and it really isn't...which is okay! We had figured out how to do life WITH a trach and that is a miracle! Life is good now and it was good with a trach! Honestly, the reason Carson was so excited to get his trach out, is that it means he'll be able to swim (once the stoma closes). And obviously that will give him more freedom and opportunities in water activities! I can not wait for the day we get to see him jump in water without a tube or something else to keep him above water!

All in all, things are going well! We actually head back for follow up scopes & a procedure this Friday.

Carson's stoma did close up a lot but it did not close completely. Hoping that the procedure this Friday will help encourage the healing process and it will close completely! It is a long story but let me just mention the miracle of this appointment coming up. There was some confusion or miscommunication about the next steps but when they initially scheduled this follow up on 11/11 (Friday) it didn't have the TCF closure (procedure to help encourage the stoma to heal) on the schedule. Once we finally got it added to the surgery and looked at the schedule, there was no more OR time on Friday to add the closure. With holidays, there then wasn't another time, until JANUARY, to get the scopes and procedure done at one time. We thought about cancelling it all and waiting until January but finally got a hold of the right people and the doctor agreed to squeeze in the TCF closure Friday. This means, we still have a chance of Carson's stoma being closed before we go to Hawaii in December! When they called me last Friday to tell me they would make it work...I just about started crying! I was so happy! And then on top of that, we will also have a room at the RMH because they had a cancellation! Things seem to be lining up perfectly, not to mention that 11/11 is a special day anyway. It was the day that they removed Carson's teratoma. Now, I'm just praying Carson stays well and we can make the trip and it all goes as planned!

Okay, that was ALOT...hopefully it made some sense! Thank you as always for everyone that has gone along on this journey with us and for all of the love and prayers that have carried us!

Checkout that tan line?!? I can't stop kissing it, much to Carson's dismay!

Homecoming 10.13.22

Lots of excitement in Dexter!

"The steadfast love of the Lord never ceases, His mercies never come to an end, they are new every morning, great is your faithfulness." Lamentations 3:22-23