FULL day!

Carson was such a trooper today! He doesn't feel his greatest but we decided to go ahead and make the trip to St. Louis. He did wonderful at Cardinal Glennon with a FULL day of tests! We arrived at 8:45 am and didn't leave until 5:15 without much of a break between appointments. We are awaiting final results but all in all, today was a good day! It always brightens my day when I hear how many lives Carson has touched through his journey. We have so many wonderful friends at Cardinal Glennon and will forever be indebted for what they have done for Mr. Carson! We will see if Carson gets better over the weekend, otherwise we will have to reschedule his surgery next week. Praying for a miracle!

I will make some calls tomorrow to see what his upper GI showed today. This will help us determine whether we should go ahead with the pyloroplasty. Preliminary results showed us that it is emptying better than we initially thought (comparing this study to prior studies), however, I'm not sure it is emptying well enough. We shall see...

Kellen had an okay day...he ran a really high fever last night and a low grade fever on and off all day but he has NO other symptoms...interesting?!? He's not wanting to eat but luckily, Nana got his bottles down him so at least he is getting some fluid.

Thanks for all the prayers! Keep them coming!

Runaway child! Yes, he is running around in a hospital gown and tennis shows : ) Classic!

Praying for health!

Just wanted to do a quick update to ask for prayers for Carson's (& Kellen's) health. This morning Kellen had a low grade fever and as the day progressed Carson's secretions became thicker. Not sure what is the cause, whether it is a virus or seasonal stuff, but either way, Carson needs to be healthy going into surgery. So thank you in advance for all the prayers! Typically when Carson gets sick, it takes him a good week to get back to baseline, which makes surgery questionable. I know God has this ALL under control including the timing but it will be somewhat of an inconvenience to have to reschedule surgery (& possibly the appointments in St. Louis on Thursday) because Carson has to have enough time to heal before going into his next surgery in Cincinnati (which is already scheduled for the end of July). Again, I realize God is the ultimate scheduler...but I thought our current schedule was pretty good : )

Thanks to our mighty prayer shield! You all are awesome and we SO appreciate your love, prayers, and support!

18 Months!!!

The boys are 18 months old today! Wow...we've come a LONG way and we love them even more! Here are some pictures from the day! Carson has gained more weight but the puking has picked back up again : ( So unless we see a total miracle and a complete improvement on a study May 16th, we have scheduled the pyloroplasty for May 20th (along with the tonsillectomy & adenoidectomy). I'm praying now for wisdom, skill, and the best possible outcome & recovery...ohhhh, I'm kinda nervous just thinking about it!

Wrestling again...

Best Buds!

First case of road rage! LOL

Busy weeks coming up!

We have been doing good this past week...other than being stuck inside for several days because of the continuous rain and colder temperatures (gotta love this crazy weather!). Carson is walking more and more, along with squatting and following in Kellen's footsteps with his LOVE of climbing! I think some of this is after having practice with stairs while we were in Minnesota : ) Kellen continues to be on the go...walking, running, climbing, squealing, and pushing Carson around in the walker : )

Carson had a good weekend with less puking and in fact, after losing weight on our trip is back up to his prior weight. PRAISE GOD! We increased his feedings (meaning more calories) when we got home and I think that has helped, along with the fact that there is less puke! I was able to talk to Carson's speech therapist and she gave me some good ideas on trying to limit the attention given to puking! So, we have stopped talking about it in front of him, we are trying to avert his attention if he does start to gag, and we are hiding his infamous 'puke bowl' (which it is no longer called that) to try to keep the idea out of his head!

On that topic, I continue to ask for prayer for guidance for Preston and I as we make the decision for or against the pyloroplasty. I just pray for a clear answer, because if Carson continues to puke less & gain weight (which is EXACTLY what I want him to do) then it makes the decision a little less black & white. We could just wait it out & do the wait & see game, except we already have the tonsillectomy scheduled and I think we, along with the team of doctors, have decided that may be a good time to just combine surgeries - meaning only one recovery, only one set of anesthesia, and only one hospital stay, etc. The doctors are still talking and it is NOT set in stone yet but I do think that was the general consensus! Carson has SEVERAL appointments in St. Louis on May 16th and surgery is scheduled for the 20th.

We've been saying bedtime prayers for awhile with the boys but they are starting to catch on : ) Carson will put his hands together and Kellen likes to put his inside mine while we are praying and then they clap afterwards for Jesus & point to him (the crucifix above our front door). The newest thing, after we are done with all that, Kellen leans over and kisses Carson, then Daddy, and then me. Carson makes the kissing noise but he prefers not to have skin contact : ) He just likes to blow his kisses. Melts my heart every time!

ALWAYS need to be doing what the other one is doing : )

That was the ONLY puddle left...and of course they found it!

I don't know if you can see the mud on their bums...but is was precious!

PURE JOY!

Back home!

Sorry for not updating along the way...it was pretty busy while we were there with appointments and corralling two boys in a new environment (including stairs : ).

Unfortunately, we did not see immediate results or improvements in Carson's vomitting with this therapy. If hoping, praying, & wishing something would work could do it, this therapy would have worked : ( When I spoke with the therapist over the phone and during the sessions, any improvements/changes should be seen immediately...SO, although I was REALLY hoping this might work, I still don't regret going and we will just take the next step next.

I do ask for more prayers...for possible late effects from the therapy &/or a miracle in that Carson would stop puking. With his continued vomiting (which tends to only increase with travel & different routines), he has lost MORE weight (not good!) If surgery is what we need, I'm ALL for it but I'm still praying that we could possibly avoid it. I'm concerned that there is more to the reason he throws up so much...I know having a full belly all the time does not help matters but I also know that at times this isn't the cause. I'm sure part of it is behavioral in the sense that Carson thinks throwing up is a normal part of life - too bad I can't explain that it is NOT! And secondly, having a trach doesn't help because it causes him to cough more. Anyways, please continue to pray for weight gain and our decision making process for the next step.

As always, THANK YOU for your prayers for all the details in Carson's life and prayers for his health and safety overall! We definitely cashed in a few prayers last weekend. We arrived at Mom & Dad's house late Friday night...long story short we did not need to suction Carson for over 14 hours (which has NEVER happened before). This was from the time we left our house in Dexter, overnight, until the next morning. We discovered at about 8 am Saturday morning that his suction machine was not working properly. We had NO suction power. For a child with a trach, this could be life threatening because suction is needed to clear the trach/airway of secretions. God was watching out for us and for my sanity. I called our medical supply company when we realized our suction was not working (thinking that someone could just meet me at the store in Springfield and give me the needed part) only to be told that they are NOT open on Saturdays. "Are you kidding me??? My child could die!" The man could only advise me to go to the ER. Anyways, we drove into Springfield and after two tries found a medical supply store that helped us find the proper replacement part. I may have added a few wrinkles and lost a few hairs with all this but Carson never knew any different and his health & safety were NOT compromised! Thank you God for this small miracle!

We also were blessed with safe travels to & from Minnesota! The boys actually did really well during the trip with only a few melt downs. Thank you Jim, Michelle, Marissa, and Katelyn for opening your home to us on such late notice and for the delicious food and wonderful hospitality! We thoroughly enjoyed our stay!!!

I forgot my camera but here are a few pics from the trip!

Experiencing their first hotel room together on the way up : )

The boys both LOVED Angel! Carson would jabber the ENTIRE time...talking to Angel!

If Angel was out, the boys were right by her...they may have added a little stress to her life

Their first rest stop dinner experience! I think my mom was laughing inside the whole time as Preston and I were attempting to keep the boys in one area. (Grandma's perspectives are a little different than parents'!)

Who knows what Carson was saying! This is back at Nana & Poppy's in the same little tyke car I played in with Josh : )

Call me CRAZY...we are Minnesota bound!

Call us (or just me) crazy...but we are headed to Minnesota on Sunday to see a therapist that has a possible fix for Carson's throwing up. I made SEVERAL phone calls yesterday and after talking with the family, we have decided to give it a try and this coming week was the best option. I am very excited and hopeful. I'm praying that I can tell anyone that doubts (sometimes even myself) "I told you so" : ) next week. I just want what is best for Carson, so we are going to try this less invasive, alternative option first (it is a combination of several treatments but I believe it follows along the lines of visceral mobilization). And if it works...GREAT! And if it doesn't then I will feel better about having a surgery, knowing we tried the other option. We can use ALL the prayers we can get as we will be driving 10 hours with two little guys that prefer NOT to be stuck in their car seats! Also, please be praying for the weather...I believe Minneapolis got 6-8" of snow in the past couple days....ugggh!!

Carson will be seen by the therapist in Minneapolis Tuesday, Wednesday, and Thursday! She thinks we should see results after the first two days. I'm really praying we can post some really positive results next week! I will update as I can...but my mom, Preston, Kellen, Carson, and I will be heading north soon! And a big thank you to our family in Minneapolis that have opened their home to us with such short notice!!!!

Back to prayers for weight gain : )

Another update from the Clark household... First off, we are LOVING the warmer weather! The boys cannot get enough of the outdoors, however we are often limited because we live in Dexter's wind tunnel : ) The boys seem to be pretty much back to normal (in terms of health)...unfortunately, when Carson got the little 'bug' we also saw a return to his puking pattern. He is back to throwing up every day : ( So I ask for prayers for the little man...I was so hopeful that he may have turned a corner after his most recent surgery but it seems to have been short lived.

We had a follow up appointment today, with the surgeon in St. Louis that most recently revised his Gtube site. Overall, I thought the appointment was positive. The G tube site is growing excessive granulation tissue and we will be using silver nitrate to treat that with hopes of getting it to disappear. This is a fairly common problem with G-tubes or G-buttons. Preston and I were hopeful that after this surgery we could switch to a G-button (the lower profile tube) but Dr. Vane is not optimistic that it will work due to the high pressures in Carson's belly. He thinks we will have leakage issues. Dr. Vane believes Carson's stomach is NOT emptying like it should due to likely damage to the vagus nerve during the teratoma resection. Although Carson continues to gain weight overall, he is starting to lag behind his typically weight gain and is falling below the 25th percentile. As Dr. Vane reiterated today, growth is SO important right now for overall development but also brain development. SO...this leads us to our prayer request....WEIGHT GAIN!!! Dr. Vane is giving Carson a month to gain enough weight to reach the 25th percentile...this is approximately 1.5 pounds. If he does not gain enough weight, Dr. Vane will recommend having the pyloroplasty (opening the area between his stomach and small intestine) done. He says this is a very successful surgery with low risks. Of course, I do not want to have to add another surgery to his list because EVERY surgery has risks...but I ALSO want him to get proper nutrition.

Along those lines, we (I should say "I") have also been looking at a less invasive, alternative form of therapy that could assist in the emptying of his stomach and possibly improve his swallow (thanks to some insight from other family members). The issue here is that the therapist who is the most qualified and we would like to see is in Minnesota, which is a 12 hour drive.  A trip like that would require ALOT of planning, coordination, time, and teamwork without knowing that this 'therapy' would actually be a fix. So, we have been praying about the best, next step to take and appreciate all your prayers too!

The boys continue to provide lots of joy and laughter every day...Kellen is Mr. Climber and loves to explore! Carson is walking more and more but still prefers to have a hand to hold. He is also continuing to taste more and more food and is trying small sips of liquid. This is an awesome improvement!!

Headed out to play...

I'm happy doing ANYTHING outside!

Sweet giggles!

Can you see my hair blowing in the wind : )

Daddy is getting some sugars!!!

Pure joy!

"Check out these flowers!"