MRI is scheduled!

I scheduled Carson's MRI yesterday. It will be a week from Monday (Aug 12th) at 7 am in the morning. So, we have to be there by 5:45 am and will have to leave our house around 3 am. Praying for a good morning, that they get all the needed pictures, and that the doctors are able to correctly diagnose what they are seeing. Also, please be praying...we have to change Carson's trach out before the MRI (because it can't have any metal in it). I'm hoping that they can sedate him before changing his trach, to save him so much unneeded anxiety. I won't find out until that morning though. Thank you all!

One of my favorite pictures ever!

I can't post pictures from my phone to the blog but I wanted to pass this picture along...this was in preop yesterday before we took Carson back to the OR. Now, that smile can make any minute of any day brighter : ) You can't help but LOVE LOVE LOVE this strong little fighter! No worries there.

Not what we planned!

Ok, well...first off, thank you for all your prayers and encouraging words! I know they are what get us through days like today without losing hope! We are back home now after a long 'rollercoaster' day. Surgery started a little late and we were expecting approximately an hour and a half, so when they came and got us at 45 minutes, we knew something wasn't going as planned (horrible feeling!). After talking with the doctors (ENT & pulmonologist), we found out that they did the bronchoscopy, however did not remove any tissue because of what they saw during the scope. They found some tissue near the epiglottis that was 'concerning' - tissue they weren't really able to see on prior studies because of other tissue that was covering it and since has been removed. It sounded like they thought the new tissue in question was residual teratoma (however, Preston and I don't think it is) and after we talked to them more, they said it could also be scar tissue or inflammation or a number of other things but before they went 'a-cuttin' they wanted to make sure. That is why they stopped and now want a MRI. That was the second area of disappointment and frustration. Since Carson is so young, MRIs mean he needs to have sedation. I was hoping they would have just done the MRI today (while he was sedated) but they told us the MRI was booked solid until next week. Arghhh! You would think they could fit us in...huh? I mean we just drove 6.5 hours one way to get here. So long story short, we will now need to go to St. Louis at some point (probably sooner rather than later) to have the MRI, and then after the Cincinnati team looks at it, we will decide the next step, which probably means another trip to Cincinnati to do something similar to what they had planned today. This does not fit well with my Type A personality and my liking to follow the original plan!
So, thank you, God, for another lesson in patience and realizing that my ways are not always YOUR ways! : )
The other piece that is probably even more frustrating, was after the scope today, Dr. Cotton, again said, "His trach isn't going anywhere soon." To which I asked, "What do you mean? How long?" This time the reply was 5-10 years! I just want to scream sometimes (I don't, but I really want to). It is so hard to think you may actually get some good news and not only, NOT get good news, but get even worse news than you thought. First we go from, probably by a year old he will have his trach out, to 'maybe he will have it for life', to probably 4-5 years, and now we are to 5-10 years! Golly, gee, whiz!
As I'm writing this, I can just hear..."Be still" "I know the plans I have for him, plans to prosper him" But it really is SO hard to let go of MY plans and MY hopes.
Okay, so now that I've finished the ranting...there were a few good things! First off, they did not see any signs of inflammation or generalized irritation in his airway, which is wonderful! Two, they still believe his trach WILL come out eventually! Three, Carson is still sweet as can be...he rolls with all these punches and always comes out with the sweetest smile and personality! He was SO excited to be home tonight with Kellen!

Thanks again for your continual prayers! We will see what the next step brings and on the bright side, this just leaves room for more miracles!

Off to Cincinnati!

Leaving for Cincinnati tomorrow morning! I can't wait to have this trip over with and get these two boys back together. As they get older, separating them gets harder and harder. We just keep telling ourselves that it is one step closer to getting his trach out! With that said, I am also so thankful we are getting a lot of these surgeries over with while Carson is young enough that he doesn't fully comprehend everything that is going on, it keeps some of the anxiety away and allows him to hang onto more of his sweet innocence! Thanks again for all the prayers!

I will update as soon as I can...Surgery is scheduled for 11:10 am (Eastern time) on Wednesday and we should be discharged Thursday!

Prayer Request!

Well, surgery is just a little over two weeks away...I forgot to mention one of my biggest prayer requests, in the last post, in regards to the upcoming surgery. He will be having a bronchoscopy (meaning they will take a look at his airway overall). I am REALLY praying that they get a good baseline picture of what his airway looks like. So, I am praying he is 100% going into it (he has had more secretions the last week or so but seems to have turned the corner now). They have told us that an 'inflamed or irritated airway" has to be under control before going into the big reconstructive surgery (whenever that may be). Anyway, we had never heard that Carson's airway looked inflamed (including the first evaluation in January) until his most recent bronch in Cincinnati this past March. This could have been due to a number of things, being stressed, throwing up more, or irritants from the air, etc. So, again, I'm just praying that they get the most accurate information from the bronchoscopy this time. Thanks in advance to all our prayer warriors!!

Holy Cow its been awhile!

Okay, well I knew it had been awhile since I did an update but I didn't realize it had been a month! It's been busy around here as I'm sure everyone's summer has been! We've been doing well overall...we've had several exciting moments! Carson's eating is still very sporadic but (with the help of Robin - his speech therapist) we've had a few breakthroughs. When given a good incentive (a new game Robin made), Carson has taken up to 16-20 small bites of baby food/yogurt. VERY IMPRESSIVE! It is so comforting to see this but also frustrating because as he may do it a couple days in a row...he then stops for several days. But we keep chugging along. He has also eaten up to two little yogurt melts at a sitting. This may not seem like much but it brought me to tears the first time he did it. The fact that he would put it in his mouth, let it dissolve and then swallow it without gagging was awesome! As I've said before, his oral feeding/intake is by the far the hardest part of his care for me. It takes so much perseverance with little payback at times (so times when he eats a little bit are huge for us!) The other challenge for me and Preston is his vomitting. It is still better than say, back in March, but he has started spitting up/vomitting several times a day again (not as much volume) but still vomitting. It is challenging for us...1. because cleaning up puke off your carpet every day (or several times a day) is frustrating (okay maybe infuriating at times) 2. it occasionally seems like Carson does it voluntarily - I'm not saying he does it to make us mad but he does it just because he knows he can and 3. it is challenging to know when or how to discipline him or if we should just ignore it (& to keep our cool either way). Anyways, I just pray for the day that I don't have to clean up puke but until then, I will be grateful that I have sweet Carson because he could have easily never made it home. (trying to follow 'Jesus Calling's' advice - keep a trusting and thankful heart)

Kellen also had a first...he took a full bottle sitting by himself (yes, I realize that most kids are not taking bottles at this age but frankly, I don't care right now...if he'll drink milk out of a bottle without a fight - he can : ) This is a huge praise because up until about 7 months ago...we would have to coerce him into drinking a bottle!

Carson is walking really well now (almost running at times) so he can keep up with Kellen better! They LOVE playing and laughing together! It is SO fun to watch!

We made our first trip to Columbia a couple weeks ago... so the boys got to see where Uncle James' lives and where Mommy & Daddy went to college. We had ALOT of fun! They also got to meet a couple little girls (children of some of my friends) that are more there size. They didn't quite know what to think about girls : )

We also had a wonderful 4th of July, with lots of family and friends! Carson was okay with the first couple fireworks but after a few he did NOT like the loud noise so he finished the fireworks off, inside the house. Now, Kellen loved the fireworks, especially the sparklers with Poppy! We even had a family photo shoot, thanks to Ahdra!

Carson has his next surgery scheduled for July 31st in Cincinnati. He will be having a bronchoscopy and a supraglottalplasty (to address the shape of his epiglottis). The recovery should not be very bad after this surgery. We are expecting only an overnight stay. I am cautiously optimistic and am hoping to get some good news but if nothing else, hopefully we will have a better idea what the next few years will hold for Carson! Thank you for all your prayers! I'm praying now for the team of doctors that will be involved and for Carson's experience/recovery!

Sorry the pictures are out of order...I got tired of messing with them...

Mizzou campus...this is where Preston proposed to me!

Look at all those curls : )

Look Mom...its a girl!!!

PT buddies!

The whole gang...

Father's Day scavenger hunt

Out for a cruise!

"Uh...is Dad going to get mad at me for wearing high heels?"

Sharing a granola bar before Daddy goes to work (EVERY morning!)

Sparklers with Poppy!

Ready for the 4th of July parade!

Ready to sing on the Post Office steps

The whole clan...

Love this picture of Grampe and Mems with the boys!

Update from the Clark household

Man, I really thought I had this ALL under control and we were doing well...that is, until I opened the George Foreman at lunch to make a grilled cheese. See, Mom & Sarah have both been gone the last couple weeks, so Preston and I have had more time with just the two of us and the boys. And it actually went REALLY well, which is a HUGE prayer answered, seeing that a year ago (& probably even six months ago) it would have been a HUGE challenge! Anyways, back to the George Foreman...I thought I had been doing good, making dinners each night, keeping everyone fed, the house cleaned up, the boys on their schedule, etc. etc. Except when I opened the George Foreman, I found a tuna cake left from over a week ago! SICK!!! Yes, that means I had forgotten to clean the George. Yes, I had smelled a slightly, fishy smell but I just thought it must be something in the trash. LOL! I just had to smile as I threw the leftover cake away. Good one, huh!?!

But other than that, we ARE doing well! Carson is back to his 'normal' and, knock on wood, is not puking much - in fact, it is usually just more like 'spit up' a couple times a day. So he is gaining weight....YAY! He broke 24 pounds and is back to the 25th percentile on the growth chart. Thank you God and another huge prayer answered (especially since we decided to cancel the pyloroplasty). Preston is getting sleep again at night, meaning Carson's secretions are back to normal. And the boys continue to LOVE playing outside despite the heat. Kellen is also growing and has actually been eating better the last few days : ) We continue to work with Carson on eating by mouth but really haven't made any huge strides but at least he is still taking sips from his sippy cup or spoon and will occasionally take bites of yogurt or baby food. We WILL continue to persevere...thank you for the prayers because meal time/Carson's eating is one area that can be stressful. It's just one of those things that I wish I knew WHEN Carson would start eating (because I do think he will eventually eat by mouth).

I'm sure all moms do this but I catch myself just staring at Carson and Kellen throughout the day, wondering where my little babies went. It seems like they have become little BOYS just overnight. If anyone ever doubts there is a God...just take a look at the perfectness of little children : ) (I'm not saying they are perfect all the time but they are just so stinkin' cute : ) Carson is walking more and much faster and has now mastered getting up from the floor without pulling up on anything. Kellen runs all day long and climbs on anything and everything. They LOVE following each other around and getting into whatever the other one is in (sometimes leading to disagreements : ) The boys jabber ALL day long and they are very good at understanding us but don't use many words themselves. We just recently started trying some sign language and I have actually been REALLY impressed!

Anyways, here are a bunch of pictures...

 First, a few from a year ago...

The FIRST fight : )

The Rogersville Wildcat Crew!!!

Snack time! I think Poppy might have had more than Kellen: )

Unloading the dishwasher...they are big helpers, you just have to be really fast to make sure the bowls aren't dropped.

Wagon rides are the best!!

Jacob and Becky came to visit : ) and guess what?!? we went on a wagon ride...

These were their smiles on command but it looks like the Clark duet!

Cruising in his new Puma outfit from Mimi & Papa!

They always want to turn their stools upside down...

NO MORE PICTURES! I just want to go outside!!!