Germs...STAY AWAY!

Oh my word...how has it been three MONTHS since I posted anything!!!! Life is full right now and Brody just keeps getting more mobile and makes things more interesting. I've realized that I seem to have less and less pictures of our day to day simply because I'm too busy chasing Brody around! Carson and Kellen are back to school (1st grade) and are having good years so far EXCEPT all those school germs! I've had one child home or at the doctor the last 3-4 weeks...ugggghhhh! But...so far, so good this week. In fact, that's where I could use a lot of prayers. Carson is scheduled to have a sleep study next Monday, September 24th and then a scope with pulmonology and ENT September 26th in Cincinnati. I do not want to go or put Carson through all of it unless he is healthy (so we can actually get some beneficial information). We will leave Sunday but I am debating keeping him home from school Friday and possibly Thursday to decrease the number of germs he comes into contact with and so if he is getting sick or going to get sick from school germs, hopefully we would know before we head out. Its so hard to know but on top of the fact that we haven't been to Cincinnati in 9 months now and last time, we really got little to no information, I also asked and found out that Dr. Cotton (ENT...world renowned and Carson's doctor) is retiring within the year. Although, I wasn't totally surprised, (he is 77 years old) I also would like to see him at least one more time before he retires.

Please keep us in your prayers for all the decisions to be made, for healing of Carson's airway, and of course, for his peace of mind and resilience. I will try to update when I know if we are going for sure. Carson has continued to keep up his weight without any supplemental tube feedings (for over 6 months now)!!!!

Thank you, as always, for all the prayers!! You guys are awesome!!

Wacky tacky spirit day at school!

Rescheduled

I wanted to jump on here [real quick] to update you on the chaos of the Clark household...summer is in full swing and I'm just hanging on for dear life  : ) It definitely is an adjustment (a good one, but an adjustment) having all three boys at home again ALL day (& you can definitely tell it when you walk in our home...ahhhhhh!)

We were supposed to be in Cincinnati today preparing for a sleep study tonight and then a scope with pulmonology and ENT on Wednesday BUT we aren't. Carson has had a cough since the beginning of May...he's felt fine but had a pretty productive and irritating cough for a long time. Preston and I decided that it wasn't worth making the trip and more importantly, putting Carson through all of that only to come home with a similar story as last time..."His airway is inflamed...he must be sick/getting sick." I was totally at peace with the decision to reschedule (thinking we would reschedule sometime in July). That's where the hiccup came in...they are scheduling out to SEPTEMBER!!! Not at all my plan...school will have already started, that's another THREE months with no more answers or plans and Kellen will likely not get to go with us because of school. That threw me for a little bit of a loop...I was frustrated and disappointed. BUT then it was time to refocus & find the good. So...we have our whole summer free!!! So instead of being in Cincinnati today...Ellie (my niece) & Nana are here...they rode scooters, went 'swimming' at Mimi & Papa's, and Carson and Kellen are taking a nap right now in preparation for a late night baseball game. I don't have a date yet for these procedures but will let you all know once I do.

Real quick, in other news...Carson has NOT used his feeding tube since mid February & he has gained weight (it hasn't been without its struggles but he has done it on his own!!) That is a GREAT BIG step!!
He was also discharged from the endocrinologist's care. We thought he would be on Synthyroid to regulate his thyroid levels for the entirety of his life but last year, the doctor told us to stop the medication because he believed there must be at least a small part of his thyroid left. The doctor was correct...his thyroid levels have leveled off and he has maintained normal levels without medication. So, when they resected the teratoma so very long ago, despite not really knowing what they were taking with the tumor because of the massive amounts of blood that was lost...at least a small part of his thyroid was preserved. Another instance of God's handiwork in the midst of it all. While the medication wasn't a big deal...Carson will take one less every day : )
Carson's cough has improved now, so I am thankful for that! Hoping and praying for a great, healthy summer. We head to the beach next week & Carson and Kellen can't wait!!

A couple pictures from Brody's one year session!

 P.S. When I say 'swimming'...we now let Carson get in the pool since his trach is capped and he is tall enough to stand in the shallow end and keep his stoma well above the water level. This is a new favorite activity for Carson and Kellen and Carson is a good sport & has a great time, even though he is limited greatly in what he can do in the pool. But our superhero Carson, had his first moment [i think] of realizing that it is his trach that limits him. One day after swimming, as he was drying off, he turned to me, "Mom, I wish I didn't have a trach." I responded in agreement & said a couple other things but then he ran off to do the next thing [ride the golf cart with Mimi]. We can realize our struggles & name them & even sit with the unfairness but something I learn from Carson over and over is the fact, he doesn't stay there long...he gets back to living life!!!

Hope you all have a fantastic summer!! Love and hugs!

Farewell Mrs. Needle

Mrs. Needle (aka Carson's feeding pole) has been a part of the family (& a fixture in our dining/breakfast area) for 6 years. She has stubbed toes (with her long legs & wheels that stick out). She's caused messes. She's been used as a walking aid (by some of our early nurses). She alerts you if you've forgotten her & left her on (by her beeping). She's traveled the country with us. She's recently been tipped over numerous times by Brody. She was needed & very useful BUT she has NOT been used in one month. It is time for her to leave. Carson escorted Mrs. Needle out of our eating area this past weekend. Carson said...See ya later, Mrs. Needle!!

This was the beginning of our procession
down stairs with the feeding pole

This was a monumental event for Carson & our family. Mrs. Needle is the name we gave the tube feeding pole early on. She was used 6x a day when we first came home from the hospital to give Carson bolus feeds through his G-button every 4 hours around the clock. Over the past 6 years, Carson has worked on eating & drinking orally and we have gradually cut back volume and number of feeds given through his feeding tube. We've been down to one (250 Calorie) tube feeding at dinner for quite awhile but I've always been too chicken to cut it out completely and see if Carson could make up for those calories by mouth. [Yes, he is capable of drinking those calories but they idea for him is to EAT more food. Kids can get in a habit of drinking their calories and then never eat more. He does get two 'shakes' a day - with added powder to his milk to increase calories but he was drinking those even with the tube feeding.] Well, a little over a month ago we accidentally forgot his tube feeding on two separate evenings over a weekend. Preston and I just decided to go with it and give it a try. {Ahem...God works in mysterious ways to give us those little nudges sometimes ; )}

SOOOO...Carson has not had a tube feeding in over a month and has actually GAINED weight!!! We are so happy & excited for him. We still have alot to work on but this is a huge step! There is alot of learned behavior and physical limitations that still make mealtimes hard but we will celebrate this step.  My original plan when we thought about cutting out the tube feedings was to put the ball totally in Carson's court...letting him decide how much he ate; however, I got nervous that he didn't eat enough on a regular basis that it might affect his behavior or attentiveness at school. So, we are still doing alot of encouraging during some mealtimes & most meals take longer than we'd like but for now...I THINK this is the best plan. Once summer hits, I will feel more comfortable letting him have more control without adverse effects at school. We'll see...I admittedly have a very hard time letting go of the reins!


I didn't realize how long it had been since I posted anything...Carson & Kellen continue to do well in school. We had a huge miracle in that Carson did not miss a single day of school, due to illness, during the third quarter. WOW!! After, such a rough fall of sicknesses...I was concerned I might need to keep him home through the worst of the sick season (I'm still holding my breath a little...but am SO thankful!) We did make a trip out to Colorado in February & both boys got to try snow skiing & tubing for the first time. They enjoyed both and we all had a wonderful time, even with a 16 hour drive each way!

This was SOOO much fun!

Give Brody a few years & I'm sure he'll be out there too.

I have scheduled Carson's next set of appointments. He will have another sleep study June 18th & then a scope on June 20th. I'm praying for good news but also for guidance for the doctors and their willingness to take time & explain the next steps/options, etc. We aren't expecting much from this appointment but I am hoping that his airway at least looks back to his baseline (less inflamed than the December scope). And prayers for Carson's peace of mind through it all...he told me the other day that the two things he doesn't like about surgeries are being put to sleep (induction of anesthesia) & getting all the probes put on his head/face for the sleep study. Unfortunately, he'll have to do both this time but we will also have some spare time to focus on FUN! Last thing...you can also be praying I am able to surrender Carson & the outcome into God's capable hands knowing he has a good, good plan for Carson and to leave any of my expectations out.

A few more recent pictures  : )

I know I'm a bit biased but I LOVE these three handsome boys (& their love for each other)!

First Easter! (The eggs were everwhere shortly after this picture ; )

Carson's Easter party at school

Kellen's party! Preston took time out of his very busy day to surprise the boys : )

Never as expected.

We are back home and have been for several days...we got home late on Wednesday. I'm in a better place today but I am still processing the information and the day of Carson's surgery. I don't really know what to make of it...but it wasn't anything that I was expecting and as much as I told myself I wouldn't get my hopes up (because the crash, BURNS!), I did. Little be little, I began thinking this might be Carson's break, this might be the grand finale to 2017, this might be another wonderful Christmas gift, God works miracles and we are going to see one...Carson was going to get his trach out...but the news we got was anything but that. His airway looked more swollen, more closed off than 7 months ago. They said, he must be getting sick (and yes, he had been sick but not an awful sickness)...some of the words they used just didn't match up with the Carson I see each day BUT bottom line he is not ready to take his trach out. Ugh! They left us with telling us to come back in SIX months, to do ANOTHER sleep study, ANOTHER scope and then we will see. Yes, there are things they can do to help open up his airway but really more surgeries are not ideal at this point (for various reasons). Really we left with no real good answers, no great plan, just a big, fat WAIT! (I kinda hate that word...I wanted to scream and yell and kick things and use unkind words directed at...I'm not really sure...maybe the unfairness of life, the disappointment, my lack of control regarding the outcome). Yes, I know, all kinds of character building things are learned in 'waiting periods,' but frankly, I'm over it. ;)

There is no greater pain in my book than watching your child suffer, to see their disappointment, their pain and not be able to do anything to take it away. Carson was SO excited when I told him their was a possibility of getting his trach out and the disappointment I saw on his face afterwards when I told him he wasn't getting it out that day, broke my heart. But, in true Carson fashion, he bounced right back...right after disappointing news, right after anesthesia (& feeling icky), he had a smile on his face (maybe with the help of a new toy ; ) and was playing. So I will take Carson's lead, and slowly stand back up, smile, and continue to persevere. Persevere in prayer, prayer for healing, prayer for a miracle, and I will not give up. I will hope again and believe that all things are possible with God, that God has come to heal, that Carson will get his break. And thank you, again, for your endless prayers, prayers for Carson and the doctors and our family. Much love and happy new year! Maybe 2018 will be the year Carson gets his trach out. And even if its not, we will focus on the things we have and are so very grateful for. I was reminded of that in so many ways in the last few days...#1 we HAVE Carson, but not only is Carson here with us...he is doing well...he is able to run and play, he is able to learn (and is doing well in school), he has a smile that will light up your heart (& the room), he can give some of the best hugs, he has some of the silliest (I mean, best) dance moves, and he is ours!

And in thinking about the many prayers that have been answered, Carson did amazingly well with the anesthesia on Wednesday...the best he has done in years. And later that day, he was asking for and eating all sorts of things. Yes, CARSON was eating all sorts of food...we may or may not have had ice cream twice : )

Here's to a wonderful 2018...full of love and laughter... and HOPE!

Brody (on his first trip) got a picture with the infamous Ronald. It was about 10 degrees in the pic.

This is the smile!! [after getting back to the RMH after surery!!]

#1 Graeter's!!!!!!

#2 Dairy Queen (They let Carson makes his own ice cream sundae!!


A couple more just for fun! 

The sweetest Santa ever!

SDC fun!

And as if I need a memory of where we have come from ; ) We still use these stockings!

Another Scope Wednesday December 27th

I'm so sorry this is such late notice...but if you read this your prayers are greatly appreciated. We are in Cincinnati now. Carson will have a flexible and rigid bronchoscopy (with pulmonology & ENT) tomorrow morning (Dec 27th) 11 am ET. I'm going to keep this short because I need to get to bed. But prayers for Carson's peace of mind (he gets anxious with the anesthesia process) and guidance for the doctors (& us) for the next step for Carson and the timing of it all. When I spoke with the same day surgery nurse for surgery instructions, she said it was scheduled to keep Carson for two nights for a decannulation trial. : O What?!? I about dropped the phone even though it is not much different than I already knew (they put stuff like that on the schedule just in case) it was CRAZY to hear that word said in reference to Carson.

I'm not necessarily expecting it (I would guess spring time) but I also wouldn't be totally surprised if they did. With all that said...just alot of guidance for the doctors because we are having to trust them ALOT in this process.

I hope you all had a very merry Christmas! We sure did and sorry again for late notice, I wasn't really sure we'd get to come because Carson has had a cold & I didn't know if he would be well in time. He still has a runny nose but is feeling much better.

Love to all and thank you again for your perseverance in prayer for Carson and our family!

Correction...indifference.

Ok, before everyone thinks Carson actually hates food...I need to correct myself. I would say that Carson is just very indifferent to food but to someone like me who LOVES food, his indifference often feels like hate or a very strong dislike but its not. It is really just a take it or leave it...Carson just typically tends to leave it : ) Hope you all have a wonderful weekend and a happy turkey day (full of lots of food)...I know I will!!!!

Food.

Food.

Some people love it. Some people hate it. For many different reasons, I’m sure. I’m a lover (& I mean… LOVER) of food!

Carson. I think he hates it…well, except chocolate and candy…and occasionally other food like teddy grahams. And I can’t help but wonder if I’ve fed into his dislike of food. While, I know I’ve only ever done what I felt would help him…I still hate to think that I’ve been a piece of any negative experiences with food but I can tell you, I KNOW I have.

Food & Eating. It’s such a normal process for most people. As I just finished feeding Brody some of his first bites of oatmeal cereal, I see the joy he has in getting to put stuff in his mouth & have that interaction with me & experience this ‘stuff’ he’s watched all of us do around the table. It’s ALL positive and I thank God that I’m getting to experience this with Brody!

But I can’t help & also think how much different it is from Carson’s initial experiences (& even his current experiences). From the very beginning (at 2 or 3 months when we started trying a bottle), we were holding a squirming baby trying to get him to take a bottle…he fought reflux and even after that was controlled, he worked hard enough to breathe that eating was never easy! (Not to mention he has nerve damage & anatomical differences that would make it more difficult anyways!) I tear up thinking how automatic and easy eating is supposed to be and how HARD Carson has had to work from the beginning to succeed at eating, even a little bit. Something that is supposed to be so easy, automatic, enjoyable is possibly the least enjoyable and hardest thing Carson has had to do EVERY. Single. DAY!

This is a topic I could go on & on about….its a struggle for Carson…it’s a struggle for me to decide what is best and what would be best to help Carson. He threw up for the first 2 years of his life on a regular basis…it wasn’t until his first reconstructive surgery at almost 4 years old that we saw the throwing up stop (for the most part). Praise the Lord! I know that eating is closely linked to his respiratory status. So when he gets sick, eating is the first thing to go. So what may be a day or two of having little appetite for us gets drug out even longer for Carson and he doesn’t have much extra fat (okay, maybe none) or appetite to begin with so we quickly see the changes. This latest virus...he had a fever for a week and didn't feel good for about 2 weeks...he lost about 2 pounds (which he didn't have to lose).

So then, it is a question of letting him catch back up on the calories, or do we help him out with extra tube feedings (even though the feeding team has told us that the longer a child is tube fed, the more detriment to the normal appetite, hunger response), do I push food more, or just let him decide and figure it out- while he likely loses more weight??? I toy with these questions over and over.

Please be praying for Carson…for complete healing so that he will one day look forward to sitting down to eat a meal, that maybe at some point…way down the  road, he may actually look at the scale and think “Man, wouldn’t hurt to lose a few pounds” ; ) But for now, prayer for Preston and me as we navigate daily life, trying to keep eating experiences as positive as possible and for the decision making process of what is best for Carson…now and in the long run!

He is a remarkable kid and I am beyond grateful for all the feeding therapists we have had over the years. I now know that he CAN eat (& drink)…even if it is hard…even if he doesn’t have a good appetite…even if we really have to encourage him to eat most days…even if there is a behavioral component to it all. I have seen him eat a full pancake, a taco, a hot dog, a corn dog, etc. (even if those times are few and far between…I’ve seen it) and I’ve definitely seen him gobble up some chocolate & ice cream : )…who says that can’t make up a well-balanced meal?!?

And we boast in hope of the glory of God. Not only so, but we also glory in our sufferings, because we know that suffering produces perseverance, perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us.

Romans 2:2-5

Perseverance is the hard work you do after you get tired doing the hard work you already did. : )

After using some of their birthday money to pick out toys : )

I hope he is a lover of food...

...and keeps this most precious smile!