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!