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!

Headed to Cincinnati

We are planning to head to Cincinnati in the morning (Saturday). I’m having to type this out on my phone so I will keep it short.

Details aren’t real clear yet partly with covid procedures in place, partly due to insurance, and partly due to playing phone tag but the general idea is the same as I mentioned in the last post. We will go Sunday to allow Carson to see and be fitted for a mask and feel some pressures. Then, the actual sleep study will be Monday evening assuming that Sunday goes okay. 

I’ve had some anxious thoughts for Carson but really trying to focus on “What is” vs “What if” thoughts.

Here are prayer requests from the last post:

• That Carson can tolerate CPAP

• That there will be a mask that fits properly

• That God will guard his mind from anxious thoughts and allow him to rest with peaceful thoughts

• That maybe, just maybe, his airway will have healed more and already be open enough that he does NOT even need CPAP – this is my miracle I’m praying for

• To guide Carson, us, and the doctors in determining if CPAP is the best option to allow Carson to thrive

• And that the Ronald McDonald House will be accepting short term stays by August. Currently, they are not due to COVID. The RMH is what all 3 of the boys have been looking forward to!

*We thought that the last one had been answered when we got a cal that they had opened the RMH back up but then we got another call and they had to cancel due to a positive covid case so we will be staying at a hotel.

God is good and I'm going to be praying expectantly to see His goodness in so many ways during this upcoming trip! Thank you to all those that join with us in prayer and positive thoughts!

“For the spirit God gave us does not make us timid, but gives us power, love, and self-discipline.” 2 Timothy 1:7

Summer 2021 Update

Man, time really does fly!!! Carson and Kellen have now FINISHED third grade & Brody completed his first year of preschool - 'Thursday School'. Brody also turned 4 recently. We now actually have the next thing in Cincinnati scheduled for Carson. The CPAP titrated sleep study will be August 23rd (right before school starts)...that was their first available.

First off, Carson still has his braces but his expander is out! Yay!!! The expander technically wasn't supposed to be out yet but after trying to use the back brackets on it to help move teeth, it came loose and the back brackets popped off the teeth. I was nervous that it might have to be put back in, but it didn't and we were so thankful to see it go! Although Carson had managed to learn to eat and talk with it...it still GREATLY limited what he could eat and many things that he normally ate were hard because they'd get stuck in the expander. After his orthodontist appointment in April, I believe, we were told the expander was going to be in for another 4-5 months ideally. We were a bit disheartened...he had already had it longer than the expected duration and the 4-5 extra months seemed like forever. Meals had become more stressful trying to make sure he was getting adequate nutrition and calories. At one point, I told him...let's just make it to the end of the school year and then we can reassess the best plan forward. Anyway, we didn't have to even do that because the expander came out, on its own, and the orthodontist was able to put brackets on the back molars...praying those will stay put and can be used to straighten, align, or whatever the heck they need to do!
God is always taking care of us and sometimes our journey takes a turn on its own before ever having to climb some of the mountains we see in the distance. Need to keep reminding myself of that! ; )

Carson played soccer for the first time this spring. He was on the same team as Kellen and I would often just get a smile on my face watching him run in practice or the games. He put forth great effort even when we could hear him breathing across the field. In the past, he had never wanted to play soccer and we had never encouraged soccer for him because of all the running but turns out he can keep up with many of the kids and can always come out when he gets tired!

Lastly, next trip to Cincinnati will involve a CPAP titrated sleep study. It will be similar to our last trip (in March 2020). They will remove his trach before he goes to sleep and cover the stoma (hole) with a bandage and then watch as he sleeps. The difference is they will be using a CPAP machine, titrating the pressures to see how much pressure he needs to keep his airway open enough to allow for adequate sleep and oxygenation. This is also a chance to see if CPAP is even an option for him. There are so many variables…I’m sure many that I’m not even aware of. We will go one night before the actual sleep study to allow Carson to try on a couple masks and see/feel what a CPAP machine is like overnight. Carson is older and has blown me away with how he has tolerated sleep studies in the past and orthodontics most recently but this whole CPAP process makes me a little nervous for him. He has never liked things on his face but I am really praying he can tolerate it. I’ve been so hesitant to get this scheduled and I know some of it has to do with me….CPAP (as I think I’ve mentioned before) seems like a backwards step. It is ADDING a machine back to what Carson needs, it means he can no longer sleep wherever he wants but will have to have a machine and outlet nearby…I’m thinking bunking parties, campouts, sleepovers…that we will be reliant on electricity. It means when I go down and check on them before I go to bed, he’ll have a mask over his face, those most precious faces of sleeping children…his will be covered by a mask. It hurts my heart but mostly it just makes me a little angry at God. Carson has gone through 2 major reconstructions, many smaller ones, and so many over procedures and surgeries….we’ve gone 9 years!!!…getting his trach out isn’t supposed to be trading a trach for a machine. It’s not what I had in mind!

AND YET, I do want Carson to get his trach out, to make water safer, and allow him to FULLY enjoy swimming, and if that means CPAP, I definitely want that option for him. I’d rather have an option to get his trach out than no option at all which, frankly, is still a possibility if the CPAP doesn’t work out. So I’ll throw my whining to the wind, and see the blessings in medicine, in possibilities, in trachs…that I HAVE gotten to see a sweet, tube-free, machine-free, sleeping face for the past 9 years. That if CPAP does end up being the best option for now, the hope is he MAY outgrow the need for it. And there is always hope in what is yet to come in medicine. And more than anything, we have a healthy, fun, growing child that we get to go on this journey with!

I will go forward with prayers to God,

• That Carson can tolerate CPAP

• That there will be a mask that fits properly

• That God will guard his mind from anxious thoughts and allow him to rest with peaceful thoughts

• That maybe, just maybe, his airway will have healed more and already be open enough that he does NOT even need CPAP – this is my miracle I’m praying for

• To guide Carson, us, and the doctors in determining if CPAP is the best option to allow Carson to thrive

• And that the Ronald McDonald House will be accepting short term stays by August. Currently, they are not due to COVID. The RMH is what all 3 of the boys have been looking forward to!

God never said the journey would be easy, but He did say that the arrival would be worthwhile.”

~Max Lucado

Thank you, as always, for going along on this journey and praying us through the mountains (& daily hills)!! Muah! Xxxx

*Side note: I was going through pictures to pick a few to upload. I see all the fun we’ve had and it changes my perspective instantly. We will be fine no matter what! Sadness may be momentary but joy comes in the morning! It’s so easy to get stuck in the negatives or uncertainties, but we have so much to celebrate! Thankful for pictures to highlight the good times…which doesn’t negate the hard times but helps me to keep perspective!

An epic Christmas gift...a trip to Legoland!

All three still ask when we can go back!

Skiing in Colorado

Sledding this winter <3

Effort gets you places!

Carson and Kellen are both in this pic!

Three of my favorites!

Practicing for CPAP...this is not a CPAP mask but a little step to get used to it.

First swim in the pond...thankful Carson gets to experience it too.
We've found that a life jacket and noodle keeps his trach above water safely!

We love spending time with cousins!

Nine years!!!

Happy 9th birthday week to Carson & Kellen!!! And happy teratoma removal anniversary to Carson today (11.11)! These two have celebrated big {with friends and family} this past week!

This time of year I get caught up thinking back to the beginning of their lives & how far they've come {which in turn leads to gratefulness}.

* I get to celebrate the boys and how much their lives have changed mine…parenting is harder yet better than I could have EVER imagined. It has changed me in a million ways…I get to celebrate their lives and all that they are…their spunk, their creativity, their energy, their uniqueness.

* I get sucked into scrolling through pictures from the past 9 years and I’m laughing one second and bawling the next. Time goes by SO fast…while I wish for some of those little years back…I also can’t wait to see what’s ahead! We have been through times that I hope I NEVER have to relive but they make the good times all the better (just like today…9 years ago…I was surrounded by family but there was tension like you wouldn’t believe because we didn’t know what the outcome would be with Carson's surgery…yet today, Carson and Kellen went to school and had basketball practice like any typical 9 year old.

* I take a real look at what life is meant to be...because I used to think it was supposed to be fair and I have to realize through stories in the Bible and just living life that it was never meant to be fair. While I know I am blessed beyond measure, have a truly great life, and have actually witnessed true miracles in Carson & Kellen's lives...I also see Carson get the short end of the stick in many ways & sometimes suffer simply because of his beginnings and the teratoma. He definitely doesn't think much of it (and I try to see the blessings before I dwell very long on the unfairness) but I see how running is harder, talking is harder, he can't be heard at times with his friends, in class, in the gym, or when he even sometimes when he tries to talk to Alexa : ). That meals are HARD...that he doesn't have much appetite, that he spends tons of extra time chewing food and sitting at the table. That he can't be carefree around water, etc. That I lose my patience with him way too often. But again, that's not the point of this...it makes me remember that although life isn't fair, we can use our blessings and our experiences to then help others. That we can make lemonade out of lemons and that the successes are all the sweeter because you've worked extra hard to get there. Plus, real living includes all of the ups and downs and in betweens...it's finding God wherever we are, seeking him out, and making the most of what we've been given! Finding the purpose that is ours alone...that God created us to fulfill!

* But I think more than anything…reflecting on Carson & Kellen’s lives makes me believe in the goodness of God working through people. Their birth & months that followed was the first time, I couldn’t do it all on my own (or even with the help of Preston) and I saw people step up to fill in the gaps for us. Family changed schedules so they could come help or we could be home, friends were there, coworkers held fundraisers, people I didn’t even know wanted to help in any way possible. Thousands & thousands of prayers were {& have been} sent up for my family and we made it through! Although life isn’t what I thought it would necessarily be 9 years later…life is full of fun adventures with Carson & Kellen and for that I am so, SO very thankful!

As I told family today...there is no better feeling than knowing your family is covered in prayer and love. Thank you for the role EACH of you have played in that!

THIS is the day the Lord has made let us rejoice and be glad!

Psalm 118:24

Birthday celebration with the Guillorys

Going on a scavenger hunt...with crazies in the back! Ha!

Trying out Papa's canoe on their actual birthday

...and a swim!

He's officially a brace face (said only with affection)! He did great getting them put on...but we already have a bracket loose and we will have the expander until at least spring to help stabilize his teeth because he has an enamel defect.

Orthodontics & Back to School...waiting on the sleep study

Whelp...it's been a LONG while since I've posted anything...so many times I meant to send out an update to ask for prayers for this or that and never made it to the computer. Carson and Kellen are back in school...we went back to in person school in August with precautions in place to limit exposure between kids & teachers. We feel comfortable with the set up and I have spoke with Cincinnati in regards to Carson. They feel like Carson is no more at risk than any other kid because his lung health is good. This was what I had thought all along with COVID but hadn't actually talked to anyone that knew Carson's case well. 

So far, so good. It was a big change from last year...the boys switched buildings, get grades now, have more homework, and more work than play but they have adapted well and had good reports from their first quarter! Carson still has an 'aide' that is there in case of emergencies and to be an extra set of eyes on Carson at recess, lunch, etc. He has the same aide as last year and for that I am grateful!

I spoke with Cincinnati prior to school starting trying to figure out what the next step was for Carson, what it would look like in light of COVID, and when. The CPAP titration sleep study is the next thing and it is just to 'mark the box', see if it is or isn't an option for Carson. But for Carson, they would do what they call CPAP desensitization for a couple days/nights...hoping that will help him because CPAP may not be a pleasant experience. He hates having things on his face. So...timing is up to us but I've not scheduled anything yet because in August Carson started on the orthodontics train! I didn't want to do too much all at once and Carson not tolerate it well. So for now we are just waiting on the CPAP sleep study.

Carson's orthodontics though has been a pleasant surprise...as I have mentioned before, every dental visit is a visit that involves anxiety and unpleasantries for Carson just because of his oral sensitivities and gag reflex. SO...when we started with orthodontics and the recommendation was a palate expander and braces now, I had some anxious thoughts about how that would all go. He got his palate expander in August...I really didn't know if he would tolerate getting it put in BUT he surprised me and did REALLY well...no problems at all except for the last little bit with gluing it in place. That was not pleasant but we all survived (the orthodontist included...Ha!). We head back next week for the braces...prayers ARE appreciated!!! I'm told they won't be as bad but it does require that same glue that smells/tastes weird! 

Hopefully we will find out how long the expander has to stay in next week also. My thought is to wait on the sleep study until the expander is out! The expander has posed extra challenges with eating and speech but Carson has adapted fairly well....big improvements from the week immediately following! I really didn't know if he could go to school because his speech was so hard to hear and understand initially (that improved). Eating has been more challenging but we are navigating it. I pray daily for patience and guidance for me...If I could only give him MY appetite!

For now, we are enjoying life as much as possible...we've done a lot of hiking recently in Southern Illinois and Southeast MO...the colors and sights (minus the copperhead snake..aaaah!) have been beautiful. I'm praying that this waiting period (since last spring) may allow for God's work, for growth in Carson's airway, that MAYBE we won't need CPAP after all...that maybe by expanding Carson's palate it may actually help with opening some of his upper airway when he sleeps. That may ALL be wishful thinking but I am praying (& know) God works in this waiting! 

Thank you as always for all of you who continue to pray for Carson & our family!!

Bearcat Fridays!

Elephant Rocks

Have a Happy Halloween!

Quarantine

Just over a week of quarantine and although there are tense moments most days...we are making the most of it and I'm so thankful these three have each other...we've played in the creeks and in the woods, rode bikes, done several art for kids hub drawings, built lots of legos, spent as much time as possible outside, and attempted some second rate 'homeschooling'. However you are doing this time is great! I think there are so many blessings in it and that can come from it. I love to see how God works and I'm so glad we can always trust His ways.

Two weeks ago, we were in Cincinnati & all this Covid stuff was just starting to spread...I had no clue this is where we would be now. The results from Carson's sleep study and our decision to wait to decannulate was SUCH a blessing in disguise!! Carson is safe with a trach and I feel so much more comfortable having the trach with coronavirus floating around. I would be scared to death, right now, if we had decided to take his trach out two weeks ago! So thankful that they are times when you see God's mighty ways work out in your life and how even disappointments sometimes work out in your favor. God is good ALL the time!

Just remind me of this the next time I get irritated things aren't happening in MY timing!

Praying for all of you too in this ever changing time!!

Yes, my soul, find rest in God; my hope comes from him.

Trust in him at all times, you people; pour out your hearts to him, for God is our refuge.

Psalm 62:5 & 8

We can't rush this.

Well, we are back home...Carson still has a trach.

I was reading my last post and had to kinda laugh...basically all of my prayers were answered (other than getting good (best case scenario) news). But then, why do I still feel so disappointed...

Carson did so well with the process of the sleep study...he seemed a little unsure with his trach out but he said he was okay and he was able to sleep enough that they got adequate data. They left the trach out the whole night.

The sleep center said they got good data. And Preston said Carson coughed some but not a whole lot. They did see some improvement. So....the only disappointment is that the improvement wasn't enough to say he can take his trach out and he doesn't need any additional support.

The improvements...he had less obstructive events (but still considered moderate sleep apnea) and he didn't desat with these events (his O2 levels did not drop much).
However, he still has moderate sleep apnea and that isn't good. The doctor gave us three options that he was okay with. 1. Go ahead and decannulate, knowing we'd need to get CPAP set up at a later date. 2. WAIT on decannulating and get CPAP set up at a later time but BEFORE going forward with taking his trach out. 3. Do nothing different...continue on with a trach. He said time or waiting could work in Carson's favor - that the area that is likely causing the obstruction MAY continue to open up as he grows but that you can't say that for sure either.

We decided to go with option 2...this was also the doctor's personal preference. We will attempt another sleep study with CPAP (at a later time) and see if that improves the results.
I guess alot of my disappointment comes from the point that I was hoping for big improvements on the sleep study because all surgical interventions have been done and we kept getting - what seemed to be - really good news from the most recent scopes. Because trading a trach for CPAP (something that he has to be hooked up to every night, that has to be taken with him anytime he'd go somewhere overnight, that is another machine that is giving him aid) just doesn't seem as big of a win. When we were in the NICU every time we got rid of a machine from the room (Nitrous, the ventilator, IV poles, etc) it was a little victory...so putting one back in his room just doesn't seem quite so happy. I'm not trying to sound like a Negative Nelly...its just not quite what I was hoping for. And on top of that, although I know many people use CPAP and that it is a GREAT thing...Carson hates having things on his face so I'm not sure how it will go, it may not be a good option for him....it's ANOTHER sleep study, another process. It's hard going on this emotional roller coaster.

With all that said..I'm thankful that there was some improvement...we know that he CAN sleep without his trach if something were to happen...thankful for doctors that are looking out for Carson...And thankful that Carson is able to roll with the punches. He seems totally fine coming home with a trach. He mentioned several times in his prayers that he was thankful that he did 'good on my sleep study.' <3 And he did...he slept without his trach and he did everything he was supposed to...sometimes it just isn't God's timing. And I need to accept that. I know God has big plans for Carson and they are good!

In other news...we had a great trip. Poppy got to come along for the first time and Carson and Kellen got to show him a lot of our favorite things!

Lunch in Paducah at the Skate park

Dumping 80 lbs of soda tabs from school

The wonderful craft room

Sleep study champs

The zoo

I read this in a devotional on the way home today..

"It's okay to have things. Just know that the real life - deep joy and true meaning - is found elsewhere. People. Relationships. Compassion. Community. Food. Faith. Doubt. Love. Laughter. Sweat. Struggle. Tears. Triumph. This is what it means to be alive." ~Gideon Heugh

...it hit me...we were alive this trip...I think I experienced everyone one of these THIS trip from the fun we had, to the people that were with me, to so many texting/calling/checking in on us, the prayers that went with us and covered us, the upsets, tears, smiles, laughs, etc....deep joy - true meaning...real life is a great thing to experience.

Again...thankful for each one of you and every single thought and prayer sent our way!