10! Double digits! A decade! ...and a quick update

Wow! Carson and Kellen are 10!!! So thankful for these ten years and the joy these two have brought! We've celebrated big over the past week or so and still have a couple more to go! Every birthday deserves multiple celebrations!

#10

Celebrating with some of their cousins

We were just talking in small group about how we celebrate things {Easter, Christmas} to remind us of God’s miracles/presence in our lives and this world. And my prayer has always been that Carson and Kellen will understand the magnitude of their birth and lives at some point and I hope that in some way, our retelling of THEIR birth each year will help and allow them to see the miracles. I can get caught up in what hasn’t happened yet or things that need to change but I took time today to remember just how God saved these two, has allowed them to thrive, and all that He has done for us in and through their lives and journeys!

Ten years ago, they were born into an OR of 42 nurses & doctors…each with a role. They were all there to give them the best chance at survival and to keep me safe. I’ll never know the number of people that were praying that day FOR them and US along with family that came to wait with Preston as he waited for updates throughout the delivery. Kellen had to be a fighter because he was delivered 7 weeks early and under general anesthesia…so it took him a little longer to get those lungs working and figuring out how to eat. Carson had a whole other fight and the doctors would take on a 10 hour surgery 3 days later to remove a mass, bigger than his head, that was being fed by his carotid artery. No one could name ALL the risks that the surgery entailed and no one knew how it would turn out. Risks that he may not be able to talk or swallow or breathe on his own or… survive! But, Carson did! And although he has gone through more than 30 surgeries and more suffering than I care to remember (& still more to come)…he gets to do most all the things that he wants to and has a smile on his face more often than not. And I have no doubt, that is, in part, because he has his best friend by his side each and every day!

 

There are so many other details that are part of the miracle of these two but one that came to mind again was how God puts people where they need to be for the purpose He has designed for them. Dr. Yang & Dr. Vlastos were those people. They didn't care to take the chance, to GIVE a chance, to a little boy that would be named Carson. Dr. Vlastos gave us the hope we needed to cling to. And Dr. Yang was gone from that hospital facility less than a year AFTER Carson was born. Dr. Vlastos was gone, I believe, five years later. God protected Carson and Kellen from so many other complications that are part of many premature babies journeys. I cannot thank God enough, even though a grumble some days!

…Against all odds.

Dirt Dessert and Brownies were their requests

Group hug!

Stoddard County Fair

Both boys really enjoy soccer and Carson got his very first goal this season!

The Croods...Halloween style 2021

I realized I never got around to doing an update after our trip to Cincinnati in August. It took a little while to get the official results, and then it took me awhile to actually process it all. It was disappointing and disheartening...not something that really surprised me since we were there with him but nonetheless, I was praying for a miracle. A miracle that either CPAP would just be a breeze for him or the best kind, we wouldn't need CPAP at all.

That was not the case...CPAP is still needed and may be needed for forever. Answered prayers were that Carson did really well trying on the masks and working with the respiratory therapists on different fits, flows, and masks. In fact, the first night, we were pleasantly surprised at how well Carson did. He slept for about 6 hours with one mask on. However, the next night, the RTs had the mask MUCH tighter and after being on night 2 of less than good sleep and it being in the middle of the night and still adjusting different masks and cinching them tight...and not being comfortable, and I'm sure some nerves were involved, and feeling queasy to your stomach, the RT thought it was enough and ended the CPAP titration study saying 'CPAP was not tolerated.'

Carson was happy to go home without the CPAP (they weren't comfortable) and he felt like the trip was a success in the fact that he did what we wanted him to do...he tried the masks and did his best sleeping with the masks on. And, I would agree!

Long story short, and after me having to explain the results to the nurse who called...since she was just relaying the doctors thoughts. They did get enough data to find a pressure that was adequate for Carson. He didn't tolerate it all night or even well but we did get a pressure. The doctor wants us to return after the new year for more scopes and to discuss the next steps. I'm hopeful (& the nurse thought this was a good and likely next step) that they can send a CPAP machine home with us and we can practice with it at home and allow Carson to get used to it in a comfortable setting before attempting another sleep study.

It was disheartening because I don't want more sleep studies...they aren't fun for Carson. I don't even want CPAP but if we do need it, I hate that we may have to go through a big adjustment phase before he is comfortable with it. I want to move on with the next steps for him and get the show on the road but for now, we wait. We wait partially for more scopes, and partially because Carson is still finishing up head gear as part of his orthodontics journey. I want there to be an easy road for Carson but sometimes that just isn't God's plan.

These types of things take me a lot of time to accept...to accept that my kiddo just has to walk the difficult road. I want to kick and scream and tell God how much I don't like His plan even though I know His plans are better than mine. Even though I know He loves Carson way more than I do. It's easier for me to just go on about our daily lives and act like none of this even happened but I know I need to accept it because whatever journey is Carson's, I want to be there, encouraging him along the way, excited to walk it with him, excited for whatever decannulation may look like for him (and still praying that decannulation IS and WILL BE an option at some point soon).

...Against all odds

We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned, struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. 

2 Corinthians 4:8-10

I say it alot, but it is so very humbling to know there are so many that still pray for Carson and our family on a regular basis. Thank you! I never, ever thought he would still have a trach at his 10th birthday but I also never, ever thought he could do as much as he does WITH a trach. It's just life for him and we are all here for it!