We have made progress!

ONE year ago today, we busily and anxiously packed things up and prepared to bring the boys home to Dexter for the FIRST TIME. It is amazing to think back and see how far we have come. I can honestly say that I did NOT know how difficult this year would be, especially the first several months but I know that was God's way of protecting me because I probably would have buckled under the weight (but isn't that how God works...he only gives us what we can handle at the time : ). We left our 'safe' world of the NICU and came home to a completely different world. We have had more people (not even counting family -although some feel like it now) in our home than I would have ever guessed. Preston did not know he would have his mother-in-law or sister-in-law living with him at most times for the better part of a year : ) We changed what was the nursery into a revamped hospital room. We (Preston and I) didn't know we would NOT sleep a full night in the same room again (except the times we get a night away).  But on a more positive note, we didn't know the friends we would make that otherwise would never have met. We didn't fully understand how blessed we are to have a one-of-a-kind family. We would never have guessed the amount of support we have received from family, friends, and the community. We have learned so much about the power of prayer and trusting fully in God's plan. We will never be able to thank everyone enough because it was not by our power alone that we survived this first year.

Carson's favorite nurses from the NICU

Ready for the ride home (a year ago)

And to see how much the boys have changed and progressed is truly a miracle! A year ago, Kellen was frequently just held and carried around. Carson was secluded to the nursery the majority of the day (because he needed the oxygen and humidified air that was only available in his room). His alarms went off several times an hour which required our immediate attention. He had to be suctioned approximately 45-50 times a day. We were supposed to trust nurses that we had never met before and someone stayed up at all times. WOW...we have come a long ways! Now, the house is quiet because the boys are both asleep but just a little while ago...Kellen was running around with Carson crawling behind. They were playing in the laundry basket trying to shake it side to side and laughing at each other. Carson is no longer on oxygen and is suctioned 10x or less in a typical day. God is good and I am so glad he gave us these TWO precious boys!

We had another small miracle...Carson went over 24 hours without puking!!! It has probably been two months since that happened. It's the small things that matter : ) The boys also made their second trip to the Petelo and they didn't get sick : ) YAY!

Lunch around Nana & Poppy's table : )

Kellen's favorite toy...Olivia (an old doll of mine : )

Look at this monster truck!!

Checking out the 'farm' with the guys!

Watching Penelope & Tuna...one of their favorite spots!

It was SO great to see some of my friends! Thanks for coming out to the house Erin!

Our favorite PJs

Reading books with Ra-ra

Back at home...Kellen is checking out the plumbing and Carson must be his assistant : )

Playing in the laundry basket...it didn't used to be such a tight fit : )

We have a date!!! Praise the Lord!

YAY!!! I got a call this morning from Cincinnati that we are down for Carson's first surgery Thursday, March 14th. This is actually earlier than we thought and will work out great because Carson should be recovered for Easter! This first surgery will include removal of the suprastomal granulation tissue (just above his trach), as well as a lingual tonsillectomy (removing excess tissue at the back of his throat). They are also teaming up with GI & General Surgery to close Carson' current Gtube site and will relocate it. This means that he will eventually be able to switch over to a button (a lower profile tube) as the new site heals, which also means less care required for us and less tape & 'stuff' on his belly.

SOOO...let the prayers begin for safe travels, good health leading up to the surgery for Carson and all of us, for the surgeons that will be working on Carson, and for ALL the other little details that go into traveling with Carson.

Please also be praying that Carson continues to get better. We are going on a week of Carson being sick : ( he is getting better slowly but surely. It is just amazing (& sad for Carson) but what is only a runny nose and very slight nasal congestion for Kellen is a full blown sickness for Carson. It is hard to understand what this is like for a child with a trach. It means, at times, suctioning his trach every 10 to 15 minutes, him not getting to wear his Passy Muir valve because his secretions get too thick, him coughing REALLY hard, and him not sleeping well which means Preston (or whoever is staying up with him at night) does not get much sleep either. Anyways, please be praying that he continues to feel better. He is now able to wear his valve for a few hours a day. You can tell he likes to have it on because he can then make noise : ) I think it is so much worse for Carson simply because when Kellen is exposed to a virus (say it is through the air) he inhales it through his nose & mouth, where Carson inhales it into his trachea so it starts out being deeper simply because of the entry point, if that makes sense. No doctor has ever explained it to me like that but it makes sense to me.

Here are some more pictures from the past weeks. Happy belated Valentine's Day also! We had a wonderful night...I made filet mignon, along with the sides, for Preston (Mom helped too : ). It turned out very well...Preston even commented at different points "I've had a lot of steaks and this is definitely one of the best!" "I think this is the best meal you have ever made me." I am so thankful that one, Preston is easy to please when it comes to food : ) but he is also very appreciative of the food I do make.

They LOVE books! (especially the one that has wheels : )

...and 'Spot' books

...and the whole box of books!

Papa's new contraption...HORSE rides! The camera's battery died before I got pictures of Cowboy Kellen

Trying out the mohawk (thanks to Aunt Ra-Ra - that's Sarah)

Kellen's 'do

Kellen loves running around without his clothes on...who cares that it is February?!?

Valentine's Day meal! I had some of the best Valentine's!

Checking out their personalized Valentine's Day cookies all the way from Kansas! What a sweet sweet gift!

Still Waiting...

Sorry it has taken me so long to post an update but I keep thinking maybe in a couple more days I will hear the ACTUAL date the next surgery is scheduled. It has now been over a month since we were in Cincinnati and they are STILL waiting to get confirmation from the three doctors on a date and length of time the procedure is likely to take. This means that we do not have a date set yet! If you can imagine, I'm getting a little perturbed and I'm sure the scheduling people are tired of me calling, but come one peeps....!!!!!!

The boys attended their first volleyball game this past week...Sarah and I have been playing on a park and rec team and were in the championship game last week. The boys did really well at the game...I wasn't sure how it would go considering the loud noises, buzzers, and such. We have just been plugging along...using the few nice days here and there to get the boys outside because they spend a good portion of the day standing or playing by the front door or standing by the window staring dreamily outside : ) They absolutely LOVE being outside!

The boys caught a little bug somewhere and where Kellen just gets a runny nose for a couple days, Carson has a cough and his secretions from his trach get thick. It changes the feel of the days because it is frequent suctioning and hearing Carson's cough just makes me hurt. Some of it is that the trach makes his cough sound even worse than it is and so far, he has remained pretty happy with his contagious smile on his face. But I am SO thankful that the boys have remained healthy for the majority of the winter...which is a miracle in and of itself. Although we don't leave the house much...there are lots of people that come into our home.

Here are a few pictures from the past few weeks!

Carson is waving again!

I may not eat by mouth but I know how to make a MESS!!!

Watching the Wiggles with Poppy!

Nana is showing Poppy how to do it : )

Cathy Ching got to stop by and meet the boys : ) Yay!!!

Tasting some of Mems' ice cream

Our two cool dudes! Check out those shades!

After Mommy and Aunt Ra-ra's game! The two best cheerleaders!

Still waiting to schedule...

I spoke with the nurse practitioner again this past Thursday and we are still waiting to schedule Carson's first surgery. She has a few more scheduling details to check.

Good news is that they will be able to combine the relocation of his G-tube site along with the airway procedure. This means we will also have to schedule a clinic visit with the surgeon that will work on the G-tube. This is one thing the nurse is checking on...we are hoping and praying that the surgeon will agree to having this clinic visit the morning of the surgery instead of the day before. It would be awesome if he would agree to do this because that means we would NOT have to get a hotel for one night (which also means we would not need to unload & then reload 'our whole house' as Preston puts it).

Other good news...the suspicious area that they saw on the MRI is likely a hemangioma that Carson has just below his trach. We discovered this only from more questioning, on our part, about the size and location of the 'suspicious' area. We were VERY happy about this...a hemangioma is a cluster of blood vessels just below the skin. These areas typically go away as the child gets older but they are still going to check it out to make sure.

So, this first surgery could include a one to FIVE night stay, depending on how involved the removal of the granulation tissue above his trach is. We will not know this until the actually procedure is performed. Of course, we are hoping for a shorter stay but will be prepared for 5 nights.

We have completely switched over to a new formula for Carson now but he still continues to vomit (probably once a day on average). I just feel horrible for Carson when this happens so often. No one can give us a good reason WHY this is happening. I plan to talk to his dietician in the coming days but we may experiment on our own...less volume or skipping a feeding at night to allow his stomach to empty completely. Who knows.... prayers are appreciated : )

Otherwise...things are going well on the homefront. The boys are getting bigger and bigger. Carson has really started jabbering more in the last couple weeks. And they continue to interact more and more. Kellen motors right along and loves to carry anything he can find (doesn't matter if it three times his size). Carson is getting alot faster, whether it is crawling or running in his walker. They took their first bath TOGETHER today...this was big for us. With Carson's trach, bathing (or anything that involves water) carries many risks. They did really well together and Kellen didn't splash too much : )

We still are working on the art of drawing.

Playing peek a boo with Dad!

I probably should clean my windows because they are ALL covered with fingerprints and face prints : )...they LOVE to watch people come and go!

Our happy boy waving! He loves to wave!

Visit with MawMaw and Aunt Bonnie

Whoa...this is bigger than my tub! (First time in the big bathtub)

First time with bubby!!

THE Plan!

I just spoke with a nurse practitioner from the Aerodigestive Center with Cincinnati Children's. So...good news or bad news first??

Well, some potentially bad news...they found a 'suspicious' area on the MRI that is just below Carson's trach and could be residual teratoma. Although, I just don't believe it is residual teratoma, she said they will just take a closer look with the first procedure and remove it, if necessary. But other than that, we had good news about the results from the impedence probe (which measures reflux). The study was normal : ) That is a WELCOME word. So this means that his reflux is within normal limits so NO need to do a fundoplication (another surgery to tighten the sphincter between the esophagus and stomach). More good news...all biopsies and samples taken during the procedures last week were negative! So the next procedure will be to remove the granulation tissue just above his trach site, investigate this 'suspicious' area, and hopefully relocate his G-tube. The nurse is going to check to make sure we can relocate the G-tube with these other procedures. That way he will not need to go under general anesthesia an extra time and will eventually be able to switch to a G-button (which is lower profile). She will call back next week to confirm that we can. We are hoping to schedule this first procedure within the next couple months!

I know I say this alot but thank you for the prayers! So many have already been answered and I KNOW we have many more miracles to come!

Here are a couple pictures from the past week!

The new favorite vantage point...this time watching the unexpected snow fall!

Playing outside!

Oooooo...that's cold!

It wasn't very windy so we got to take a walk too!

Happy Birthday to the best Daddy in the world! : ) We had a chocolate, chocolate, chocolate cake!

This is last year...it was SO nice to have both boys with us this year!

Back home

Sorry, it has taken me so long to get back on here...Yes, we made it back home around 12:30 am Friday morning. It was a late night but the drive really wasn't too bad. Carson slept pretty much the whole way and we only hit bad weather in the last couple hours. We were all so glad to be home but Carson was REALLY excited. He could hardly go back to sleep for all the dancing in bed, clapping, and smiling he was doing. Such a sweet sight! We unloaded the car but it looked like a tornado hit our house until the following night.

It was so good to see Kellen too...he really made some improvements in walking while we were gone! And had only picked up a few bad habits : )...I guess that's a result of spending lots of time with Nana & Mimi : ) What are grandma's for?

Anyways, all in all I think Preston and I both feel like the evaluation went well. Of course, we would have both liked to hear that the trach would only be needed for several months or a year, or that it would only be one or two surgeries but the most important thing was that they were hopeful and have seen something similar to Carson's case before. The last day was an EXTREMELY long day for us because we had the first appointment at 9:15 and then had to wait until 4:30 for his MRI. Carson did better in the FEES, his swallow evaluation, than I was expecting. Don't get me wrong...he did NOT like it but he was able to collect himself too. (This had to be the prayers...and I was able to keep almost dry eyes.) It confirmed several things that we already knew...that his swallow is not normal and he does have difficulty coordinating the many components of a swallow but the good news...he HAS a swallow! The doctors and therapists think that many of the problems are due to decreased muscle tone in the neck, which is likely a result of nerve damage done while resecting the teratoma. In terms of feeding...our plan is to continue with just letting him experience tastes of food (not worrying about volume) and aspects of meal time. He is at an increased risk of aspiration and as we proceed with surgeries, he needs to adapt to the changes made. The challenge for me is that there is a fine line between letting him experience food and practice swallowing without pushing too far where he develops a negative connotation with food. The other challenging aspect is that we do not see daily or even weekly/monthly improvements in feeding. So we will just continue to persevere.

Carson sure made an impression on the staff we encountered in Cincinnati. Many people commented on how good he looks, and how happy he is. He was insistent on waving to every person that entered or left the room as well as people that walked past us. If the people did not wave back, Carson would wave even harder : ) Such a sweet boy!

We should get some news and hear what the big plan is by Thursday or Friday next week. The doctors should have all the scans, biopsies, and labs back by that time so they can make the best decision possible on how to proceed.

Here are a couple pictures of the boys since being home...

YAY!!! I'm home!

This was lunch time...all 3 boys were yelling and pounding on their 'trays'

Nana was leaving to go home...I guess the boys thought they were going too! (Yes that suitcase is from when Sarah & I were little)

"How can we get out there?"

Cincinnati

Carson recovered wonderfully from anesthesia today. Liz said he is acting just like himself after taking a short nap and is all smiles this evening. Liz and Preston are sleep-deprived, but they are making it. There were three doctors in the operating room. The results are preliminary, because they have not been able to completely review the information found nor discuss it with all the doctors. However, here is the synopsis of what we know now. There are multiple blockages in Carson's airway from the level of his nose to just above his trachea. He does not have as much tracheomalacia as bronchomalacia (further in his lungs than the trachea in the bronchioloes he has "floppiness" or weak cartilage)  from the results today. His epiglottis and vocal cords are quite a bit displaced from the normal location. As a result, the physicians feel it will be a minimum of 4-5 years before there is a possibility of removal of his trach. To be able to accomplish this, Carson will have to have multiple surgeries to try to remove scar tissue, extra lymph tissue, and potential reconstruction of his airway and/or larynx, but they do not feel it is completely insurmountable. His esophagus looked good on this exam. He may have a slight bit of extrinsic pressure but not enough to cause the difficulties swallowing that he has experienced. His lining of his esophagus and stomach looked good other than the need for a G-tube revision at some point, because it didn't heal in a circular shape but rather irregular shape that none of the G-tubes or buttons fit resulting in leaking. They do feel he will need his G-tube for at least a few more years, so that surgery for the G-tube revision will have to be accomplished at some point.  Tomorrow is the FEES test (evaluation of swallow) and they have added an MRI at 4:30 pm tomorrow. Liz and Preston are planning to drive back, so they will have nursing care to help watch Carson so they can get some sleep. Please pray for safe travel as they are pretty tired already and have a full night and day tomorrow. Although we know God has a good plan, please pray for peace in the hearts of Preston and Liz, because this news indicates a long road ahead for them and Carson.