SNOW Fun!!

Hope these pictures brighten your day! We had a blast! This was the first snow that I had to MAKE the boys go back inside! They had a lot of fun playing in it! Kellen is our new 'snow angel' master and Carson likes to throw snow balls or better yet, just throw snow up in the air : )

Carson has continued to do well with food...I have pureed more meals for him (i.e. chili and spaghetti) that he has done okay with. And he is doing better with chewing some things (mostly small bites of crackers or cheese puffs). We will continue to persevere! Praying that he continues to gain weight. He lost a fair amount several weeks ago but has maintained it since then.

I can't help but laugh when I see this picture...Ready to hit the slopes!

Our mini snowman

Cool dude Carson in our wagon-mobile!

Clarification

Ok, just wanted to clarify...I am NOT pregnant but Aunt Ra-Ra IS. : ) 'Lil' peanut' is what Sarah and Emmett are calling their baby.

Alright...that's all folks.

Everday Miracles!

(I'm knocking on wood, as I type this...) But as of right now, the boys and I escaped the flu - that's our miracle. Preston came down with the flu about a week and a half ago. I was holding my breath for the following week just waiting for one of the boys, or myself, to get sick, praying the whole time that we wouldn't. I went through a giant tub of disinfectant wipes, did 1-2 loads of laundry a day, and stepped up the handwashing : ) Praise the Lord that we all survived...poor Preston, we were afraid the boys would never go near him again. Because we repeated "Stay back, get back, don't touch Daddy" over and over again : ) It got to the point that Carson and Kellen would see Preston or point to the couch that he was on most of the time and say "ick" (for 'sick') as they backed away. : )
Thank you to all of you who continue to pray for Carson and our family. I know many times, they may not be specific prayers but know they are always appreciated!

We also switched the boys' beds to toddler beds a few weeks ago...I guess I have to accept that they ARE growing up : ) They have done really well so far...sleep is one thing that the boys truly appreciate. Kellen has only fallen out twice and I think it was just his feet (but enough to wake him up). They LOVE playing in their beds too. Several times, I have heard them laughing from a different room and I peek in to see what is going on. They will both be in the bed playing with their nerf guns or some other toy of choice.

Carson continues to do well with eating. He lost a little weight but is maintaining it now. We are still working on different textures, flavors, and chewing. He is sleeping so much better now (much less coughing) after we cut out the midnight feeding. We also stopped his Zyrtec and he has continued to do well. I am SO thankful that the boys have been as healthy as they have been this winter. Let's hope the next few months are the same way!

These boys may be in for a rude awakening when lil' peanut arrives : )

A lesson in static electricity!

Playing with Mer-Mer

Happy Birthday Daddy! Last one before the big 3-0!

Sleeping angel.

Not many things are sweeter than this.

Big steps!!

Wow, where did the past month go??? We had a wonderful holiday season spent with family and friends! We made two trips to Rogersville to celebrate Christmas with the Bunch side and then later to celebrate Poppy's and Darrin's birthday. And celebrated with the Clark side in between those trips! Although the boys like their routine, they actually do pretty good when it gets a little off! They made it until 10:45 on NYE and were still functioning the next morning : ) We are so blessed by our families and friends and we have really enjoyed these past weeks! The boys are talking more and more and surprise us with new words every day! I think my favorite is 'Elmo'. We are definitely to that phase of 'it it's quiet...I better go check on them.' I never know what I'm going to find...whether it is the diapers strewn all across the room, toilet paper unrolled, or tampons unwrapped, pulled apart, and scattered throughout the bathroom and bedroom.  But really, they are pretty good most the time and play together well. My favorite is hearing them laugh at each other and chase each other from room to room or chase each other on their tricycles that have been brought inside for the winter : )

We were blessed more than we would ever know when we were chosen to have twins! Not only do they have a built in playmate but it helps us to get Carson's life as 'normal' as possible. I can't imagine life with only a single child.

Other huge praises and steps I didn't know would come this month...Carson's blood work that checks for recurrences of the teratoma came back PERFECT! The chance of having a recurrence at this point is <2%. We don't even have to have those levels checked again unless there is some concern.
AND....drum roll...Carson is no longer 100% tube fed. We have cut back 40% of his tube feeding in the past month! This means that he is replacing those calories with food and milk that he eats/drinks throughout the day. So far, he has continue to do really well and is still gaining weight despite the reduction! Please continue to pray for Carson's eating...he does really well with most pureed foods but anything he has to chew is still a challenge! I have no doubt he will eventually conquer those foods too! Carson and Kellen are now the same height but Carson weighs over 2 pounds more than Kellen. : ) Kellen is not a picky eater, he just isn't a big eater and doesn't find that same enjoyment in food that I do! Please remind me when the boys are teenagers and are eating Preston and me out of house and home, that I once prayed DAILY for the boys to eat! I'm sure I'll need the reminder.

And last, I will be calling to schedule Carson next appointment/evaluation in Cincinnati in the next few weeks. We are looking at the beginning of April. Prayers are appreciated, in advance, for the evaluation and the team of doctors that will be working on Carson. Although this evaluation will require general anesthesia, I believe it is purely for another look at his airway and anatomy. Nothing will actually be removed or changed. As always, I pray for a miracle for Carson's airway, that it will open up with the least amount of reconstruction. And that we will get some good news from this team of doctors. These trips/evaluations are hard for me because since his initial evaluation, the results have not been the most optimistic. It seems like the timeline for decannulation only gets longer AND longer. However, as of now, they have not said anything that leads us to believe Carson would NOT get his trach out eventually. So, we will continue to wait expectantly!

We hope you all had a wonderful holiday season and Happy New Year! We can't wait to see all the blessings in 2014!

Christmas at Rog

Mini doctors' coats that Nana made : )

Decorating Christmas cookies and eating them at the same time : )

Cousins!

Christmas Eve at Mimi & Papa's!

Storytelling by Meredith! The boys love 'Mer-Mer'

Papa and Mimi with their grandkids!

Ready for Santa to come! The boys were amazed that Santa ate the cookies and drank the milk they left!

Love these boys!

Christmas morning was a success!

What helpers!?!

New Year's Eve!

Love this picture!

The boys had a blast at their first NYE party!

I LOVE this time of year!

Yay for snow!!! It just topped it off...I love Christmas time, especially when we have lots and lots of snow AND still have power : ) This will be short but I wanted to get some of these pictures up...Carson has continued to do well with eating. I catch myself just holding my breath sometimes...will he eat this time? how much? is he going to gag and throw up? I feel like it is all a dream sometimes and I just pray I don't wake up : ) Carson doesn't always eat as much and it at times requires more 'encouraging' than others but I do think it is clear that he CAN do it! Now, its just a matter of progressing to solid foods and eventually getting rid of that dang feeding tube! I have actually talked to the dietician and Carson's speech therapist and we ARE going to try to cut one feeding out (200 calories). So, that means that Carson should technically cover those calories by the foods he eats by mouth. Please, please be praying that I can keep it all in perspective because I want to keep it as positive as possible.

Secondly, Carson has done better overall with his coughing, however there are still times when he seems to cough more than usual and occasionally he requires supplemental oxygen at night for no obvious reason. I just continue to pray for direction and guidance for everyone that is involved in his care.

We have sure had fun these past couple weeks, here are a few pictures...

Buds!

Turkey trot crew!! We had so much fun!

Their first 'trot'

They look so grown up...getting ready to go see Santa!

Daddy's big helpers!

Love this picture!

First look at ALL the snow!

A tree needle must be getting Carson : )

We have some more snow ice cream lovers!

Kellen thought he was ready for the snow : ) haha!

Now we are ready!

11.11.11

Our miracle day! Two years ago today, at almost this exact time, we were anxiously awaiting our first look at Carson after they had removed the teratoma. He had undergone somewhere around a 10 hour surgery and those ten hours were touch and go. Obviously our nerves were on edge. Our entire family gathered together, spent time praying, held Kellen, anything to help pass the time, while we waited for updates and then for that news we all wanted to hear. The teratoma was off and Carson had survived - and I don't say that just to say that. Really, I don't know how many people actually thought he would make it. At the time, no one led me to believe they didn't think he would but when you read the operative note and the first line says "The parents are fully aware that he may not survive this surgery" and when multiple nurses tell me (later), "I really wanted to believe he would [survive] but I just didn't know if he would," it really hits you, I just witnessed a miracle surgery! I'm not taking anything away from the surgeons that performed the surgery because I know they have a most amazing talent and knowledge of what they were doing but I KNOW the 'divine physician' had His hand on theirs, guiding their every move and cut. At some point human capabilites reach their limit and only God's grace can explain how/why Carson's life was spared. Thank you God!

So in addition to my last post, I want to add...
THANKFUL for having access to some of the best medical care (from the time the teratoma was spotted on a routine ultrasound, to the many trips to STL for prenatal care, to the delivery, to Carson's surgery to remove the teratoma, and every subsequent clinic visit and surgery at Cardinal Glennon and Cincinnati Children's since). It is only because we live in the United States that some of this care is possible. We have friends who live outside the US tell us, if you lived where we do, it just wouldn't have been feasible to save Carson, let alone Kellen and yourself. WOW! That really makes you stop and think. I am so thankful for all the doctors, nurses, and medical personnel that have played a role in our story.

Two years ago.... (and this is a 'good' picture)

Yesterday...God is GOOD!!!

 

 

 

For you make me glad by your deeds, Lord; I sing for joy at what your hands have done. How great are your works, Lord, how profound your thoughts! 

Psalm 92:4-5

 

Two other things...

 

Thank you to all those who have served and are serving our country today...I am so thankful to live in the country I do. I know the liberties we have did and do not come without a cost. So thank you, thank you!

 

And...Once again, we have been blown away by others' giving spirits. Peach's Neet Feet is an amazing non-profit organization that creates custom painted shoes for kids with chronic illnesses or conditions. Artists donate their time and amazing skill to create the shoes, and other people donate money to provide these shoes for sweet children like Carson. Carson received his shoes this past week! And not only did they send shoes, they sent a FULL box of gifts for Carson and Kellen (because Peach's Neet Feet found out that Carson had a twin brother). Wow...thank you, thank you, thank you to everyone that was involved! It brought many smiles and lots and lots of joy to two little boys!

I think it is safe to say..."He LOVED his shoes!"

 

TWO YEARS OLD!!

Happy Birthday to our two miracles! They have brought so much joy to our lives and I only fall more in love with them each day. In these two short (or long, however you look at it) years, they have taught me so much about the things that REALLY matter in life.

Thinking back over the last two years...I have so much to be thankful for...

THANKFUL that because of all the additional care Carson requires, it has been MUCH easier to NOT sweat the small stuff...instead I am able to (usually : ) focus on the most important things - the smiles, the laughs, all the 'firsts', the sweet little boy hugs, kisses, hearing your child call your name, the hugs from those who love you when you don't think you can keep on, keeping on, etc.

THANKFUL that God knows what I can handle and when. For example, if I had known from the beginning that Carson would STILL have a trach at two and taking it out would be nowhere in the near future AND that we would STILL be working on eating by mouth on a daily basis. I may have quit before our journey ever began. We originally thought that two years was the maximum time Carson would have his trach. However, life is manageable now and actually enjoyable! I can even take the boys some places by MYSELF, when in the beginning, we had to have THREE adults just to take them anywhere.
 
THANKFUL for family, and those friends that are like family. I still remember walking into my kitchen the morning after our first night at home (in Dexter) with Carson and Kellen. I just started crying while Mom and Dad hugged me. I was saying, "How can I trust my child, who could have a life threatening event at ANY moment, with these nurses that I don't know, some of which can hardly hear, or see, or walk, or even think straight..." Well, our family stepped in to help out, and those that couldn't be here physically, sent up prayer after prayer! And look how far we have come!

THANKFUL for Preston! I knew he would be a wonderful dad within the first few months of meeting him. But he has gone above and beyond. He loves these boys in the only way he knows how...with all his heart! He does things that most Dads wouldn't do. He has even learned to call our couch, his bed just so he is available if Carson or the nurses need anything. I mean, really, he has probably only slept in our bed, a handful of times in the past year. He is amazing and I probably don't tell him enough. (maybe I'll learn how to do that in the next year :)

THANKFUL for the power of prayer and personal experience in the results of it!


THANKFUL that I have learned to EXPECT miracles because when you begin looking for all the little miracles, your eyes are truly opened to the hand of God!

THANKFUL for finally accepting this truth...Life just is NOT fair, so don't expect it to be! Thinking back over my life, I had never really been tested...I mean, really, I had a pretty 'fair' life. I was born into an amazing family that loves each other and loves God. School was easy and I always had friends by my side. I went to college and grad school, found a degree and occupation I loved. Got a job, got married, and got pregnant. I mean, I really didn't have anything to complain about...Life was good (I need to follow that up with...it is even better now!) But really, I had never had my faith and my will tested like I have these past two years. There is no fairness in the fact Carson has to endure what he does on a daily basis, it isn't fair that he can't do all the things a typical two year old can, it isn't fair he has to have surgery after surgery after surgery. BUT, Carson has taught me, that it is all about attitude! It is our job to make the most of our circumstances! Happiness is not about having the perfect life, it is about making the life you have, perfect!

THANKFUL for my two sweet birthday boys! (I know there are many more things I could list, but its late and I need to go to bed)

The boys had a wonderful birthday and the weather was nice enough we even got to go to the park.

Carson's 'funny face' while licking the beater : )

This is actually huge for Carson...WANTING to lick the beaters clean : )

And of course Kellen loves them!

Family pileup!

Birthday boys!

Love that smile!

Too sweet for words!

One year ago!

Almost two years ago...we have come a long way!  

 "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28