I was wrong...good news!!

I will be wrong, a hundred times over...in this case!

We got good news yesterday after the scope [MLB]! They were pleased with what they saw, even the nurse practitioner gave a little [happy] *gasp* when she saw his airway during the scope. Dr. Smith (this was the first time Dr. Cotton was not there, since retirement) was encouraged by what he saw, and this was not even at his best. Carson has sounded better! Dr. Smith wants to go forward with a sleep study because Carson's issues have been at night and to get the most accurate reading, we will actually take Carson's trach OUT for the sleep study!! It will be put back in if there is any concern during the study. Then, if the results are good on the sleep study, we will continue with a two night decannulation (taking his trach out) trial! Guys...THIS is the next step we have been waiting for forever but especially for the past 2.5 to 3 years! This is basically 'best case scenario' news!

There will still be some hoops to jump through even if the sleep study goes well & definitely if it doesn't. Taking a trach out is very anti-climatic. It is simply removed and the hole closes on its own. In Carson's case, Dr. Smith does not believe it will close on its own and will need one or two surgeries to actually close it. They have learned or other hospitals have learned, you do not stitch the stoma close because that can lead to serious complications, even death. Also, we will have to monitor Carson and see how he does if they do decannulate in the near future. He may have a need for continuous pressures (CPAP) at night or when he is sick. That is all TBD. But we will take this good news! Thank you SO MUCH for praying along with us!

The sleep study is scheduled for March 10th. I'm starting the prayers now, that he will be 100% healthy for that!

Also, Carson did well getting the IV prior to anesthesia and then using IV Versed before the actual induction process. This seems to help keep his anxiety level lower. He rated his 'nervousness' as a 5 out of 10 for one of the nurses. I will take it! Because I'm guessing 10/10 would have been his rating on prior visits during the induction process. We are so very proud of him! And when his anxiety is less, it makes mine less too. This was a good trip!

Stop #1 on the way up!

Their favorite skate park!

Obligatory pre-op picture!

Grater's...where we celebrate good news and keep on keeping on after unwanted news!

On our way to Cincinnati

We are headed to Cincinnati. I’m kinda sad/frustrated because  he has sounded great but got some sort of something Saturday & feels fine but sounds congested. I’m guessing we’ll get a ‘He’s sick. Come back.’ I called and the NP said we could reschedule or go ahead & come. Preston thought we should go. So, we are on the way but I’m not as hopeful for ‘best case scenario’ news.😩But, I’ve also been wrong before.
The MLB (scope) will be at 9:30 ET tomorrow (Wednesday). Praying for Carson’s peace of mind as always but also that the doctors get some sort of helpful information. Even if it is, ‘This is what Carson’s airway looks like when he is sick.’

EIGHT!!

Guys! I am behind [shocker]...Ha! Carson and Kellen turned 8 years old on the 8th of November. Ever heard of a golden birthday? Well, that's what their 8th birthday was this year (since they turned 8 on the 8th).

We had a fabulous time celebrating with friends and family! The original plan was to have several friends over and just let them loose in the bottom of the pond [we are in the process of digging]. That seemed like a great idea until it rained and rained...and rained.  So we switched gears & kept it in the yard, but strictly outside. No one wants 15-ish boys in their house. Ahhh! They had fun...their friends had fun...and we had fun watching them! Win, win, win!

I reminisce throughout the year but this time of year, I find myself reminiscing a little more often to the time of their birth and removal of the teratoma and the following weeks, months, years. To think where we came from, from the fears we had, the unknowns, the struggle...to now! Some of our struggles & fears are the same but so many are COMPLETELY different.

"I always felt like I was waiting for the gift. But I've come to see that the waiting IS the gift." 

I read this in a book recently and I could not write something more meaningful in regards to Carson's journey. We are still waiting in regard to getting his trach out/his eating but there has been SO MUCH joy in the waiting! And I'm oh so thankful we didn't know at the beginning that it would be 8+ years but I am also so thankful that around 18 months or so, it hit us that we need to stop WAITING for his trach to be removed to start living but to just START living right where we were. It looked different then...we stayed home a MAJORITY of the time to keep him healthy but that slowly gave way to park days [lots of park days], vacations, even beach vacations, riding bikes & scooters, to play dates, school, 'swimming,' climbing rock walls, and hiking to the top of a mountain. It was just taking little steps along the way, making the most of what we were given, yelling at God sometimes, crying, asking 'why', but in the end stepping up to the journey that was ahead of us. Searching for hope when we didn't feel it, looking to God but also to each other for hope, encouragement, and steadfastness [is that a word?]. The most growth happens in the valleys and I hate to admit it sometimes because I worry I'll be sent more 'valleys' to shape me into the person I am to become but it's the truth. I still don't know I can say I'm thankful for the teratoma & all its taught me but I am so very thankful for the lessons I have learned and the shift in my perspective to more of the important things. Because as much as decannulation [getting the trach out] and Carson eating seems like the end goal for now, I know perfectly well there will be more challenges along the way. I hope that all these things we've learned can be adjusted and used in those challenges too!

As I hope you know...you all have been a part of this journey, the cloud of witnesses, the hands & feet of Jesus, and the safety net of prayer warriors that has strengthened us through the last 8 years. Much love to all of you too!

Other updates:
We will go back to Cincinnati for a bronchoscopy January 8th. We are hopeful that we may get good news! And praying that Carson is healthy and an accurate picture is seen by the surgeons.

Carson has not lost weight...so that's a plus [but he hasn't gained either]... no, he has NOT had some miraculous increase in appetitie. And I find myself trying to greatly encourage more food when really my idea was to put that ball in his court [totally]. Some of that 'encouragement' stems from the fact that he needs to keep experiencing different textures/foods and his body needs good protein, etc. We are hanging in there and I AM thankful that he has not lost weight. Continued prayers are appreciated!

Oh...and Carson had a dentist appointment again today (they have him come every 3 months to increase familiarity) and he ROCKED it! He didn't have to do bite wing X-rays which was great but he laid back further in the chair and only gagged once [and that was because a piece of plastic got in his mouth somehow!!!!] And he used the straw sucker many times. He still doesn't want the water shot in his mouth and hasn't attempted their toothpaste because of the grit but I'll take it : ) They were happy too and said he can come back in 6 months since it is easier for him. Next step...we need sealant on his teeth!

Last thing...I hope everyone has a fabulous Thanksgiving (there is a reason Carson & Kellen were born in November...extra reminders of all I have to be thankful for!) and a wonderful Christmas season!

Lego Ninjago...family fun!

The entire crew...complete with lego ninjas & ballerinas

Friends!!

Bedtime chaos!

At least they are all still laughing! [that's not always the case]

A golden birthday!

Wanted to repost this from four years ago (11/11/2015)
11.11.11 ...Four years ago, Carson was going through a life saving surgery (his body was shutting down because of a 2+ pound teratoma on his neck). It was a miracle surgery...no one knew what the outcome would be but we were all praying. He went IN to surgery with facial features that you could hardly recognize and came out battered and bruised but with all those sweet, perfect facial features in place (complete with a 'butt chin' just like his daddy and Kellen)! I thank the Lord for the surgeons and nurses that day...those that took care of our baby when we couldn't. I'm so thankful that we've had four years with Carson, his joyful laugh, contagious smile, and all his silly antics. We didn't know what was in store for us (& thank God because it has been rough at times) but the joy overcomes it all! God truly knows what we need when we need it. One of those being Kellen...not just a brother but a twin who can support Carson and ground us in only a way a child can! Sometimes we have to wait days or years to see God's plan (or maybe we will have to wait to ask him face to face on some) but we CAN put our total trust in God and just focus on finding joy in each and every moment!

Thank you to so many of you that have prayed for them since their birth (& even before)...I will never be able to thank you all enough for the support and love that have been showered on our entire family!

First time seeing Carson after surgery 11.11.11

Four years ago [& still one of my favorites]

Appetite

Okay, so several people have asked Mom or I how Carson’s new ‘nurse’ is working out. First off, it is so incredibly thoughtful and meaningful to us that so many of you still follow along with Carson. Thank you, thank you, thank you!

Good news, we (Carson & Kellen and I) are very pleased with Ms. Reeda! The little info I’ve gotten from the boys is “that she is fun!” And they seem happy to talk with her and she is so very compassionate and seems to really enjoy being around, not only Carson, but the kids in general. So thank you for the prayers! And so far, we are off to a good start with no emergencies or hiccups at school, in regards to trach related stuff.

While I’m at it…I’m going to throw out another HUGE prayer request. Something that has always been the little elephant in the corner. Probably the single biggest stressor and frustration in our daily life. Every. Single. Day. Another one of those seemingly normal activities for most kids, that just isn’t for Carson.

EATING.

It’s hard to put into words what our meals are like and why (without experiencing it firsthand daily & being there from the beginning).  There is nothing ‘NORMAL’ about Carson’s exposure to or journey with food. He started out being tube fed, every single meal. And looking back…we overfed him. My kids just aren’t big kids…not even at the 50^th percentile for weight. So he was getting overfed (although we were only doing what we thought was best at the time)… and from there we had to slowly introduce food while combating excessive vomiting, secretions, etcetera. And let me tell you, Carson has come a LONG way. But to get a kid to eat food, even take bites, that doesn’t really get what hunger/fullness is, and didn’t for the first 2 years+ of his life…is hard. It requires a lot of work, a lot of external rewards, a lot of creativity & a lot of patience. Thank you to all those that have walked the walk with us!

With all this said, Carson has now gone about 1.5 years without a tube feeding at all…that’s progress! However, with that, I have fallen into the habit of still determining how much he needs to eat, making sure he gets enough calories each day and slowly mealtimes have turned into super long productions, occasionally with Carson sitting at the table for an hour or more (eating or not eating but us waiting for him to eat.) Guys, I take full responsibility for that poor decision. That is definitely not ‘normal.’ But it is [was] me trying to make sure my kiddo gets adequate nutrition to grow & heal, etc. But, it is almost always a stressor, it cuts down on the time he should have to play and for us to spend time as a family. It is not healthy, it is not allowing Carson to take ownership of his body, it is not helpful for him to learn any hunger/fullness cues, and it is still causing me a lot of stress. I prayed a lot and felt I needed to do something different. Guys, I know I’ve tried this over and over again and have resorted to my old ways over and over again. I have just as many things to overcome as Carson. We have seen periodically that Carson really can chew/swallow fairly well and occasionally actually seems hungry (I’m talking like after a surgery day when he hasn’t had anything to eat.) Along with that, it is very obvious that Carson has a very small [limited] appetite.

It is just SO HARD for me to relinquish control, to not feel like my ability to get Carson to eat is my life purpose or where I get my worth/my daily ‘grade.’ To watch my kid [who is already very thin] NOT eat without letting my fears & emotions get the best of me, knowing that he can’t just woof down a ton of food at one time because of some actual physical limitations in chewing & swallowing large bites is HARD! Like REALLY hard!

But we can do HARD. We can do it. We need to do it.

I’m not sure what the next steps are but for now, I’m really trying to remove all my emotion from it. To let meals return to what they are meant for…to fulfill a hunger, to be family time, to be enjoyable. To encourage Carson, to let him know I’m on his side, to praise the good & allow him to have meals where he doesn’t feel like eating much. To kick up my game on healthy, calorie packed snacks and foods. To stress less and smile more. And pray that God nourishes Carson even when he isn't eating much.

Thank you all for the many, many prayers along the way! And just in case anyone is wondering, we already do a couple ‘shakes’ a day with extra calories and vitamins in them. And the reason we’ve worked so hard to get rid of the supplemental tube feedings is because in a case like Carson’s the longer he uses a tube feeding the more dependent he becomes on it. For appetite purposes, we have to let him feel hunger and since he does have some physical limitations…it is important we keep working on chewing/swallowing, etc. But with that said, we DO still have the G-button so we can always fall back on it (but oh man, that would feel like a huge failure).

We CAN do all things through Christ who gives us strength. Phillipians 4:13

Stoddard County Fair...one of our favorite weeks!

Bearcat Friday...what a crew!

Wacky Wednesday....part of their homecoming dress up days!

Fun afternoon helping Preston on the tractor!

Triumphs and changes

We have a late start this year, in Dexter, due to needed construction/renovations on various school buildings so we have not started the school year yet. But...I had to hop on here to tell of a huge success for Carson and ask for prayers for this coming school year.

Ever since Carson was born he has had certain oral aversions. I'm guessing it's in part from having so much done in his head, throat, and neck area. He doesn't like having things put up by his face, on his face, definitely not in his mouth, he doesn't like certain foods, textures, etc. He has a quick & strong gag reflex. He has done well and has come a REALLY long way (just getting him to take bites of food used to be a big deal, brushing teeth was a whole family affair...someone was brushing his teeth, someone was holding him and whoever else was there was singing/playing songs/dancing to help distract him). Oral aversions are definitely not fun nor helpful when it is time for the dentist. Think about it...water is sprayed, suckers are used, all sorts of things are put up by or in your mouth. And it's done by people you don't know all that well. Carson has been to the dentist a few times before and we have a great office where everyone is helpful and takes it at his pace...so we have worked up slowly and practiced in every way we can at home. We even took trips by the dentist office on non-appointment days to help Carson feel more comfortable just being in the office and in the chair. I dread these appointments almost as much as anesthesia days because I hate watching him struggle or have to deal with anxiety in any situation.

Let's talk about bite wing Xrays...they have been very challenging in the past...its hard to get the film positioned without eliciting a gag reflex. In fact, we've only gotten one side done on ONE occasion. Last time, we were not able to get any pictures despite Carson really trying, several times. Leading up to this appointment, Carson has been practicing with a red bite wing (no film) but just the bite wing every night at home. And he has mastered it [at home], however once it's actually time for the xray, an additional piece is added on...the Xray film...and it extends even further into his mouth. I was very hopeful that he could do it this time. I prayed all the way over and while we were in the office because Carson was not excited about going in the first place. He tried getting Xrays the first time (actually a few times) at the beginning of the appointment and although he was being very cooperative...we just couldn't get it positioned without him gagging. I was bummed...but we decided to give it a break and try again at the end of the appointment. We continued on with the appointment and Carson did great...he was able to recline some in the chair and have his teeth cleaned and 'counted' (in the past, he has just sat upright on the chair)...he used the sucker to suck out spit and water (which we have also been practicing at home) and tried using the water shooter in his mouth [that didn't go great BUT he did try]. So, it came to the end of the appointment and Carson agreed to attempt the X-rays one more time. Guys...it still took alot of effort on Carson's part and multiple attempts but HE DID IT! He got pictures taken on both sides! Woohoo!! It made me so proud of him for sticking with it and my heart was overflowing for him because you could tell he was proud of himself too and so happy that he did it! The dental hygienist and I did a little dance! So, although, there will be appliances and orthodontics in the future (which is a whole other mountain), we are celebrating this victory for now!

It's the seemingly little things because although the airway surgeries are the big things we focus on, there are so many things that are just a little harder for Carson...things that most kids don't think another thing about but its these small victories that really are the big ones!

And second, for my prayer request...I think I may have mentioned it but Carson's nurse that has been with him at school the past 2 years [to keep a set of eyes on him] is not returning this school year so they have hired a new person. I am confident this will be another great year but I just ask for prayers as I do trach training with her [she is not a medial professional...which I'm fine with]. I have not met her yet...but prayers that she is level headed, compassionate, ready to hang with a bunch of kids every day, & ready to learn about trachs (& that I am able to relay all the important information).

The boys will be heading to second grade...next Wednesday is their first day!  Thank you all so much for following along and cheering Carson & Kellen (& all of us) on!

“Success is rarely the result of one swell swoop, but more often the culmination of many, many small victories.”  -Joseph M Marshall III

"...Let us run with perseverance the race marked out for us."

Hebrews 12:1

He's got this!!

Celebrating his victory with orange push-ups!

And the most perfect water park for kids that can't swim (it was only a foot or less deep)!

Next trip in 6 months

It was a quick trip...we got back home Friday evening. The news was about what we expected (maybe not what I hoped for but what we expected)...his surgical site is healing well but there is still some swelling from the previous surgery. This just means he needs more time and that hopefully this next time the swelling will be totally gone and we can move forward with the decannulation (aka getting the trach out) process which will most likely include a capped sleep study.

We will return in 6 months for another MLB ('scope'). They did say that his airway was sized at 5.5 mm which is improved from 5.0mm. This means we are moving in the right direction. (They said 6.0 mm is sufficient -although not normal- for an adult.) Dr. Cotton will be retired by our next appointment but we did get a chance to tell him how much we appreciate all he has done for Carson (& for kids in general). He normally just gives elbow bumps (avoiding germs) but this time Preston got a handshake and I got a hug from him! <3 I would have loved for Dr. Cotton to see Carson get his trach out but he assured us he would keep up with Carson's case when he has breakfast with Dr. Smith. : )

The miracle of this trip for me was in the anesthesia induction process. Like I said, this is the part that causes Carson the most anxiety. We had talked about the different possibilities with Carson beforehand and he chose to try an IV so he didn't have the air hooked up to his trach. My prayer was for the best person to put in the IV (last time we tried this, I just remember it took two tries, there were tears, and there seemed to be alot of blood that added to the traumatic experience). Anyway, Christine put the IV in and she did it in about 5 seconds and on the first try! Praise the Lord....she was my answered prayer(& I told her)!!! Carson was just a little nervous since he wasn't sure what it was like with an IV but NOTHING like normal. No crying, no covering up his trach so we can't hook the air up and no throwing up from nerves. Seriously, I was so happy! Hopefully, it means a whole new experience for future visits!

Hopefully we will get to return in 6 months and C will be healthy [that will be right in the middle of flu season again]. Thank you all for the many prayers!!

One other prayer request...Carson's nurse/aide at school from the past two years is not going to be able to be his nurse again this year so he will have a new nurse (or aide) at school. Praying for a wonderful person that is trainable, calm, and a good problem solver and also fits in well with the other staff at school.

Headed back to Cincinnati

It's been THREE months since our last trip...kinda hard to believe and still reveling in the fact we never needed the t-tube <3 We have been busy this summer. Carson and Kellen played baseball, went to their first VBS (they loved it!), went to basketball camp, and have taken a couple trips (one to the beach, one to Nana & Poppy's by themselves, & several other shorter trips)!

We have definitely seen an improvement since surgery (when we could tell that there was alot of swelling from the surgery itself...which is expected). Neither Preston or I are expecting them to say ALL of the swelling is gone and they are ready to move forward with the decannulation process (but our God is a God of miracles so who knows!!). We do hope they can get a look at the surgery site and see how healing is progressing. This trip should just include a MLB (aka scope). It should be a short trip. We will head up tomorrow (Thursday) morning and the scope will be on Friday at 7:30 am ET.

Prayers for safety are appreciated and probably more than anything that Carson may have some out of the ordinary peace. He is old enough and has had the anesthesia process frequently enough that the memories don't fade and the anxiety just builds on itself. Now, when we say we are going to Cincinnati, he says "I don't want to do it [the anesthesia part]." Ugh...it breaks my heart. We talk through it. He really doesn't like when they hook the air up to his trach...it feels weird and really causes him some anxiety. We have talked about other options...getting an IV in preop or to try using a mask (& leave his trach capped). We've tried an anti-anxiety medication before but it never has really helped. So prayers for Carson's decision on method of anesthesia and for something to click to help keep him calm. I am praying for a miracle that the swelling might be gone (but like I said, we aren't really expecting that news). This trip should tell us what the next step is...a little more waiting or steps to decannulation (removing his trach).

Sending our love to all of you!

Baseball nights with their fans!

One of my favorite sights

Pre-nerf gun war (happy faces didn't last long)

Their happy place!! And mine too!

Blueberry pickin'

So much fun on their new swing (at the expense of some poison ivy)

They love Mimi & Papa's pool! I included this because my prayer is for Carson to be able to get in water without having to be EXTRA cautious the water doesn't get up by his stoma. About the only time we really hear Carson say "I wish I didn't have a trach." is related to water play.