Memorial Day Weekend

We had a wonderful weekend...with lots of fun activities for the boys! They enjoyed their first crawfish boil (they didn't try any but enjoyed watching all the kids!) and then spent yesterday at Mimi and Papa's (Preston's parents).

This was an anniversary, of sorts, because last year (on Memorial Day) was the FIRST time the boys went to Mimi and Papa's house. I probably would not have remembered that except, I was working on their baby books...Yes, I realize, I am over a year behind : )... and saw it. But, it was good timing because it made me realize how far we have come, once again! Some other things I had noted from May 2012...For Carson, he took his first bath WITHOUT crying/screaming and I also had noted that the trip to Mimi and Papa's a year ago, was the first time Carson rode in his car seat without crying/screaming. Looking back, I didn't realize how irritable/fussy Carson was for a 6 month old (I realize he had every reason to be) but to see how happy of a kid he is now, is a true miracle! Yesterday, he was talking, talking, talking to the cat and walking ALL over the place. Thank you God!

For Kellen, a year ago he had just figured out how to roll over and loved playing with his toes : ) Yesterday, he was red in the face (and his little arms) from trying to keep up with Meredith outside.

Other praises this past week...Carson GAINED weight...he now weighs 23 lb & 3 oz. This is the most he has weighed yet. He was close to this same weight in March before we went to Cincinnati and before the Gtube shennanigans/complications. He is still throwing up some, but it is far less volume than before surgery and is typically caused by coughing or getting really upset. Kellen also gained weight and is 23 lb 7 oz. YAY for Kellen as he is not a big eater! And lastly, we got Carson's tumor markers back (lab results that can be elevated if cancer is present - i.e. if there was a recurrence of the teratoma) and they were lower than 6 months ago and well within the normal range!

Carson continues to have more secretions (which means Preston doesn't get much sleep at night) but this is also improving. Thank you all for the prayers...I KNOW it plays a big part!

Crawfish!!! (don't the boys look thrilled : )

Hangin' with Margo and Meredith at Mimi & Papa's house

Home again, Home again!

Carson was SO SO SO excited to be home and has spent the first hour and a half going around to each of his favorite toys : ) We did switch over to a G-button...and so far, so good. We have done two feedings with success! It is really nice to not have so much on his belly and there isn't a tube hanging off him at all times! Here are a couple pictures of a G-tube vs the G-button!

Before...lots of tape, duoderm, guaze, and a long tube

After...just a little button (the discoloration of his skin is from a treatment of silver nitrate we did to get rid of excess granulation tissue)

Discharged!

As far as we know, we will be discharged this morning. Carson had this tonsils and adenoids removed yesterday morning. Dr. Costa said the surgery went well, said his tonsils and adenoids were NOT extremely large (a 2 on a scale of 4) but said he agreed with Cincinnati that this procedure needed to be done to optimize his airway. We checked another surgery off the list. YAY! Carson did really well overall. He was pretty sleepy yesterday and you could tell he was uncomfortable, especially when he coughed but I was impressed (as usual). Carson is a real trooper! He seemed in even better spirits this morning but through it all, he waved at doctors, nurses, and fellow patients : ) Carson required more supplemental oxygen yesterday than normal but after talking to Dr. Costa, he isn't surprised because when you've had a little 'bug' going into surgery, anesthesia has a bigger influence on lung function but he said this should resolve quickly (& we did see an improvement even overnight).

Our discharge is somewhat delayed because we are waiting to attempt a G-button this morning. The surgery nurse is supposed to come to measure for it this morning and then hopefully send us home with one. We are praying that it works this time! It has been a long time coming, as most kids would have had it over year ago.

Thank you once again for all your prayers...I would say we had a very successful trip and I'm glad we went ahead with surgery...now that Carson's recovery continues well.

Carson was already thinking how he was going to get out of here yesterday!

A good morning wave for Daddy!

Kellen took care of the flowers while we were gone : )

Planning to head to STL

We are planning to go to STL bright and early in the morning! The tonsillectomy/adenoidectomy is scheduled for 7:15 am. It is supposed to be a very short procedure (approximately 30-45 minutes). I am praying for the surgeons and nursing staff, as well as Carson's recovery. Carson does not act sick and has no other symptoms other than increased, thicker secretions which makes his cough a little worse but otherwise you would never know. We will most likely just have to stay tomorrow night and then back home on Tuesday! Thank you SO so MUCH for your prayers! Kellen is also feeling much better! YAY!

Pyloroplasty is cancelled!

Just an update...I spoke with surgery today and the results from Carson's Upper GI showed 'marked improvement' from his last study. This is great news in that his stomach is emptying, probably not quite as fast as it should but it is emptying. Bad news...that a pyloroplasty (surgery) is not THE ANSWER to his throwing up. Preston and I have decided to cancel the pyloroplasty for now. We will still go ahead with the tonsillectomy/adenoidectomy on Monday if Carson continues to get better. This means a shorter hospital stay and a shorter surgery. Yay!! We are praying that this is the right choice! Our biggest fear was to have the pyloroplasty and not fix the puking problem...so for now, we will just continue to clean up puke and take the next step next...whatever that may be, with no more incisions on his belly for now! Thanks again for all the prayers! I was very apprehensive about having the pyloroplasty and not sure that was the answer...so having a TEST also show that his stomach was at least emptying somewhat was the reassurance we needed to hold off (for now). I'm just hoping that we can find something to help with the vomitting (for Carson's sake primarily but also because I, and everyone else, have had enough practice cleaning up puke : )


I just LOVED 'Jesus Calling' yesterday...how fitting for our life and about just taking the next step next. (hopefully you can read it)

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!