Surgery is scheduled!

I spoke with Cincinnati this morning...surgery is scheduled for Thursday at 10 am (EST). We have to be there by 8:15 for pre op. We will be leaving at midnight the night before. Thank you in advance for all the prayers! I'll try to update as soon as possible after surgery but not sure what our internet access will be like and how Carson will be doing. Praying especially that Carson recovers quickly!

A huge prayer answered...as you all know our nursing has occasionally (or frequently) been a source of stress for us. We will get good nurses and then they will leave or take different jobs. So, one of our night nurses recently told us she was looking for a position closer to her home. This was our main night nurse who we feel most comfortable with, so I just started praying for the details and trying not to worry about it. Well we found out this week, that she received a raise to cover her gas expenses. She will be staying here (at least for the immediate future)!!! Thank you God!

Surgery is coming up!

Surgery is scheduled for this Thursday (the 14th!)...praying that Carson remains healthy until that time. We had a little scare last Wednesday into Thursday when he ran a 102-103 deg fever, had increased secretions, and swollen lymph nodes...but turns out, it was just a late reaction from his MMR vaccine. Talk about giving us a slight fright! I should find out what time surgery is scheduled and when we have to be there tomorrow or Tuesday. We are planning to drive up the morning of surgery. It is more work to stay in a hotel one night than it is to just make the trip right before surgery. Prayers for all the details of the trip, peace for me & Preston and the rest of the family, the least amount of pain for Carson, and the hands of the surgeons. We will find out after surgery how long we need to stay in Cincinnati. Kellen is going to stay in Dexter with Mom until we know how long it will be.

Here are a few more pictures : )

Carson loves talking to his 'best friend' in the mirror : )

"OH NO!" - one of our new faces...the picture doesn't do it full justice

Now for our Indian chant! "Aw! Wa! Wa! Wa!"...Kellen thinks the back of his hand is a better technique : )

Everything that has wheels gets turned over now so the boys can service the tires. Ha!

Carson is ready for baseball!

HEAVEN!! Reading bedtime stories..at least while it lasts!

More visitors! Yay! Thanks for stopping by on your way through!

They loved the little dog!

More walking : ) He is getting more confident in himself!

Carson's big news : )

 

 Carson has taken his first sequential steps! He loved the cheering and couldn't wait to do it again and again. So much fun to watch!

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!!