We are alive! Headed to Cincinnati next week...

I am so sorry that it has been so long since I have updated the boys' adventures! Thank you all for your continued support, love, and prayers!  So, we've had an eventful few months (since I last posted)...The boys were sick most of March (uggh!). It was a long month but thankful that it is out of the ordinary for the boys to be sick, especially for that long! We enjoyed a few trips back to Rogersville and to Little Rock for various events. And have had lots of fun here!

But, first, prayers please!!! We are headed back to Cincinnati next week for another diagnostic surgery for Carson. We will leave EARLY Tuesday morning, have two clinic appointments on Tuesday afternoon, and then the procedure on Wednesday. I am not sure on timing for the surgery yet.

A few people have asked for a refresher on what exactly the plan is for Carson and upcoming surgeries. We are hoping to get more information next week but here is a quick synopsis of what we know now. When we first went to Cincinnati in January of 2013, they were confident that his trach would eventually be able to be removed but told us he will need several surgeries to improve his airway and then a major reconstructive surgery of his upper airway at some point (prior to removing the trach). As far as we know, they still believe his trach will be able to be removed at some point but we have heard anywhere from 5-10 years as how long it might be. Their first attempt at a reconstructive surgery is their best chance at success. Since our initial visit, Carson has had three surgeries to remove tonsils and different granulomas (all things to maximize the size of his airway). His airways look relatively good below his trach with the exception of mild to mod bronchomalcia (floppy airway). But he still has significant obstruction ABOVE his trach, obstruction that will likely not significantly improve until there is a reconstructive surgery. Last year, June 2014, they did a 'triple scope' which includes a rigid bronchoscopy, flexible bronchoscopy, and an upper endoscopy. The bronchoscopies look at his upper and lower airways in his lungs and the upper endoscopy looks at his esophagus and stomach. Three different doctors are involved and they all get together to discuss their findings with the hope of getting the best picture of Carson's airway/body. Last year, we got the best news we could really expect..."His airway had grown proportionally to his overall size". They told us they want to see him yearly to continue to monitor his airway and growth.

Carson will have the same 'triple scope' next week. Of course, the BEST news would be a miraculous healing or that they are ready to do a reconstruction yet I don't think Preston or I are expecting it to be time to do a reconstruction. We ARE expecting more definitive answers in terms of prognosis, timing, and just a better idea of their plan. I am praying for all the doctors and staff that will be caring for Carson. I'm praying for God's protection over his sweet body while he is under anesthesia and I especially pray for peace and calm for Carson. I hate that any of these procedures cause any anxiousness or fear for him yet I do know God holds him in his arms while Preston and I are not able to hold him ourselves. As he gets older, it gets harder and harder because he knows more and more of what is going to happen yet he is not old enough to truly UNDERSTAND. So I pray for an understanding that is not typical for a 3.5 year old. And you can also stick in some prayers for Preston and me...just that we also have peace and complete trust in God's plan for our sweet Carson. Thank you again for the many, many prayers that have been said for Carson and our family! God truly is good and I am so thankful for our faith in His promises and the huge support system we have behind us!

 Now faith is confidence in what we hope for and assurance about what we do not see. Hebrews 11:1

Both pictures were taken outside our front door...

God's light, love, and peace shine through even the darkest clouds!

We have seen some of the most beautiful sunsets...this one was taken the day after Mems passed away (we took it as her gift to us)!

 

 

Here are several from the past several months...

Easter at Ellie's

Always room for ice cream!!

Their FIRST circus...it was a success!!

The boys LOVE riding their bikes!

Watch out world....

A trip to Silver Dollar City!!!

This is just too priceless...

Jam session!

Working on their 'road'

All the guys at the Petelo

Walking up the big hill to see Mems' grave...

We finally have some landscaping and the boys picked out the two frog ornaments from Mems' collection.

Boys are SNOW fun!

Wow! We have had several incredible days! We finally got snow....YAY!!! And the boys got to try out the sleds they got from Nana and Poppy for Christmas! This is the first time the boys have been sledding. We've been outside playing in the snow alot and the boys LOVE it (I may love it just as much)! They are really at a fun age and still find so much enjoyment in so many activities! Both boys really enjoy sledding! Carson definitely errs on the said of caution but he has done a really good job trying out the different sleds and seemed to be more sure of himself each day. What is so sweet is he definitely feels most comfortable when Preston or I ride down with him. When he wraps his arms around your legs to hold on for the ride. KNOWING you can make your child more comfortable just by being there MELTS my heart! I know you've all heard it before too but a child's TRUST is amazing and it really hit me the other day. If only I could have that childlike trust when it comes to how God is working in my life...how he is using Carson's suffering, how HIS timing IS best, and how he alone knows what the future holds. It is something I have to continually work towards! It is so easy for me to get overwhelmed with feeding issues but I'm trying to stay in the moment and celebrate all our small victories.

"Lean on, trust in, and be confident in the Lord with all your heart and mind and do not rely on your own understanding." Proverbs 3;5

Carson had a couple rough weeks...he got a virus of some sort with fever for several days (I think it may have been roseola) but it made eating & mealtimes much more challenging! However, he has bounced back and has done really well the past couple days, a few small bites of things like pancakes and syrup, fish, fried potatoes, muffins, sugar cookies, etc.

I just have to share some of our snow pictures

First day sledding!

Our machinery just wasn't quite big enough to get the driveway cleared ; )

Daddy and his boys!

Hot chocolate and marshmallows!!! Yum!

The boys were so excited when Margo and Meredith came over to sled with them!

This is MY favorite...their faces are priceless!

I pulled the boys down to check the mail : )

And of course we HAVE to have some snow ice cream!

What a wonderful holiday season!

Well, we just celebrated Preston's 30th birthday and I feel like our holiday stretch has come to an end : ) These past few months have been alot of fun! Since the boys' birthdays, we have had another 4 birthdays in our family along with the normal holidays. It'll keep you busy! We were able to spend Thanksgiving with both sides of our family. The Clarks on Thanksgiving day and then we joined The Bunches in Columbia for a Mizzou football game and more eating! We had Christmases in Rog and Dexter and finally got to put our house to good use when family came in for a late Christmas celebration that happened to fall over New Years. It was a blast!

The past couple months have been filled with fun but also some frustration and really hard times for me, primarily with feeding Carson. Thankfully, we are in a better spot right now. It just isn't one of those journeys that only gets better. It is often one step forward and two steps back. Carson is still making progress overall but there are days he seems to gag on everything and doesn't want to eat anything. I always wrestle with the question of how much to push without turning him away from food completely. We had to increase his tube feeding for the first time in the past year (because he wasn't gaining weight at the rate the dietician was wanting). It wasn't a big increase but it still seemed like a big failure at the time. Thankfully, after being down in the dumps for awhile I realized it is nothing to worry about. It actually is a blessing of a feeding tube and bottom line, I want what is best for Carson.  I never knew how incredibly hard this feeding process would be and I hate that meal times are my least favorite part of the day. We actually have some pretty fun times at the table but I just feel like I'm always holding my breath as to how Carson will eat, will he gain weight, etc. and then the bigger thoughts...will we ever have a meal where we all eat the same thing and both boys will be eating independently WITHOUT our help. Which I know are thoughts that are best left in the future, where they belong, but they still cross my mind at times. Anyways, I continue to ask for prayers for healing of Carson's airway and swallow. Oh, can I also ask for prayers for me not to have to deal with the typical toddler eating issues (liking something one day and hating it the next) ; ) because I know some of Carson's is just that...He IS a 3 year old (but add in legitimate swallowing and feeding problems)! Ha! All in all, I continue to learn how important and how powerful a thankful heart can be. It turns the roughest days into okay days, it points my focus towards the positives and opens my eyes to all the little miracles that do happen every day. "Give thanks in all circumstances; for this is the will of God in Christ Jesus for you." 1 Thessalonians 5:18

We did have a good report when we went for several of Carson's follow up appointments in St. Louis this week. Plastic surgery says Carson's scar has healed great, the skin is soft and looks good. So we should NOT have any problems with it restricting his range of motion. We will only follow up every couple of years and surgery will likely only be needed for cosmetic reasons if we/Carson decided to. Carson was discharged from the cardiology service. His heart checks out great! Wahoo!!! He had been followed distantly by cardiology due to a couple PFO's that needed to close up (they did on their own) and some changes in the heart that were caused by the teratoma and ECMO in his beginning weeks of life but unless we have any concerns, we will not be following up further. Praise the Lord! Otherwise, we still follow up with GI yearly for managment of his Prevacid and with Endocrinology 1-2 times/year for management of his thyroid levels. This is amazing considering we were going to St. Louis almost every month for the first several months of Carson's life.

And last, I would just ask for all the prayers I can get for my grandma. My grandma, my most independent, fun-loving, "I can keep up with all you younger kids' Mems was diagnosed with Alzheimer's about three years ago, but has been really suffering these past several months and specifically this past week. I just ask for prayers for God's mercy on her life and for peace for her soul along with prayers for all those that are caring for her. It is suffering I wish no one had to go through but unfortunately that is not what this life is about. We know God is in it with us but it is so incredibly painful to watch. "In this world you will have trouble. But take heart! I have overcome the world." John 16:33

We love our Mizzou football!

The boys picked out the tree (after finally agreeing on the same one : )!

The boys' first trip to SDC!

Waiting for the SDC Christmas parade!

Santa's Helpers

That's just funny!

It was Rice Krispy Treats for Santa this year.

Celebrating Poppy's 60th!

A little LCR on New Year's Eve (Check out the game if you haven't played before)

One of my family's traditions...banging pots and pans on NYE

St. Louis Science Center

Daddy's birthday cake!

He's 30!

This is in Preston's office...I just had to take the picture because I can only envision a similar picture in 20+ years

What seems to happen alot lately!

 Speaking of being thankful! I don't have far to look to find things to be thankful for. Every day, I could simply be thankful for my amazing family and that would be more than enough!