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!

Time never slows down!

Carson and Kellen are now officially SIX!!! Their birthday was last week and they had their party on Saturday! It has been nonstop recently and my energy and patience are at rock bottom....I think we are on the mend (knock on wood!) but Carson has been sick for TWO weeks! He missed several days of school but just has not felt well for at least a week and a half! Then Brody caught the nasty virus....SOOOO its been less sleep than normal, lots of coughing, runny noses, whining (from the kids....okay, and me too!), an almost absent appetite for Carson, and carrying around Mr. Brody most of the day. The end result...weight loss for Carson, a sore neck for me, bags under the eyes, snapping at insignificant things, and a rescheduled trip to Cincinnati.

We were planning to head to Cincinnati the end of this week for another scope and hopefully a solid plan on the the next step (taking the trach out!). BUT, then this sickness caught hold and wouldn't leave Carson alone. So, the scope has now been rescheduled for December 27th. Praying he is well for that one. And while, my first reaction was one of dread that it has to be during Christmas break...I think it may work out well because we won't miss any school, Kellen can now come with us, and there is probably a better chance that we will all be healthy. I am just really praying for guidance for the doctors in determining the best time to decannulate (remove the trach). Because in many ways I think Carson is ready to have it out & there are no further invasive surgeries planned yet there are still many, MANY questions and concerns that I have. Some of which I believe could be answered but many I believe will only be answered after the fact. Decannulation is something that we have prayed for, hoped for, and dreamed about every since he got the trach SIX years ago but it is also sooooo SCARY!!!

In other news, Brody will be 6 months old tomorrow!! I have NO idea how that can be...these months have flown by and I just want to grab hold of time, dig in my heels, and keep him a baby a little while longer! He continues to be the reason for many many smiles and lots of laughs!

We pray that you all have a wonderful Thanksgiving! This holiday is such a good reminder to count our blessings because there is always something to be thankful for!!

Jack o Lanterns!

Happy Halloween from our Trolls to you!!

Branch, Guy Diamond, The Cloud, Aspen Heitz, & Chenille

The big SIX!!!

A Ninja Party to celebrate...boys are crazy!!!

He's always smiling!!!

Brody's baptism 11.12.17

'Miraculous'

First, let me start with the sleep study...we haven't gotten the official results but Carson did wear the cap ALL night. Last sleep study, they uncapped him in the middle of the night for increased work of breathing. So that is positive. I am hoping that while they didn't feel it was necessary to uncap Carson's trach that they did still, at least, note the periods of increased work of breathing on the data. So then we know that they do see what we are talking about but that it is not of major concern. And secondly, that evening the nurse practitioner from Cincinnati called regarding a different topic but I was able to talk with her about my concerns when he is sleeping with his cap on. She was not concerned with the videos I sent previously and she wanted us to restart capping at night...as she explained it (& I agree) this time of capping at night is really what is going to tell us if he is ready to have the trach removed. While Carson's airway will never be 'normal', we need to see if it is functional & safe. We will in part do that by capping his trach and seeing if he is more tired during the day, if he is resting comfortably at night, etc.  SO.... we have now been capping at night for about a week and a half. And we will continue to do so until we return to Cincinnati in November.

I feel like I am in a much better place now...with acceptance and hope and trust at where Carson is now and for what the near future may or may not look like. It's always a process and it often involves twist and turns, suffering and happy times while we wait for our miracles. I've been reading a couple different books that have helped change my perspective but it was just yesterday that everything came together and I felt like God hit me on my forehead and said hello...don't you see that I'm doing & have done!
...I just started a bible study and this week's lesson was on Eve and more specifically on how although she had everything, she wanted the one thing she couldn't have. How we often get focused on the things we don't have and end up missing all that is good! It's all about shifting our focus so we can revel in God's goodness. The woman told a story about watching the metamorphosis of what she thought were going to be butterflies with her young daughter and when they turned out to be MOTHS (NOT butterflies!) she was very disappointed. Yet, her daughter was just amazed by the transformation, even though they were moths. The woman said while she was still sitting there disappointed, her daughter came up to her and said, "Isn't that just MIRACULOUS?!?"
Fast forward a day and Carson was finishing up a therapy session with our beloved speech therapist (one last attempt to see if oral motor strengthening will make an impact on Carson's oral feeding). Carson was done and she was commenting on how far Carson has come...that he was eating Cheerios like it is nothing, eating cheese cubes, and drinking water out of a water bottle, etc and although it is probably hard for us to see because we see him everyday [and let me tell you, if one thing causes the most daily stress, its the feeding...many times of gritted teeth, less than patient words, and frustration over the years], she sees the huge improvement. And then she says..."It really is MIRACULOUS!" Same WORD even...Sometimes God really does use other people to speak to US!

So long story short, I had gotten so focused on what we didn't have that I was missing all the GREAT improvements! And to top it off, this morning I was bringing another toy down from the attic for Brody. As I began to clean it and noticed that the music keys were sticking, etc., I was reminded of how much Carson & Kellen used this stander and the many times Carson would have PUKED on those keys (sorry for the unpleasantries : ) but I vividly remember a time, I thought I would ALWAYS be cleaning up puke. And now, it is on a very RARE occasion that I have to clean up puke. It is such a fine balance for me to occasionally let myself think of the harshness of reality, the suffering that can be so lonely but then to look up and see how far we have come & be content but then also balance that with pressing on and doing the next things to help Carson master eating, articulation, etc. That balance of being content yet continuing to try to better yourself!

With all this said, thank you for your many, many prayers & love along the way because it is in part those prayers that have brought us so far! And Carson (& Kellen) have come so very far!!

"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 5:3-5

I can't hold up this rock much longer!! ; )

They fit much easier than Preston & me!

We had a wonderful time at Elephant Rocks!

And don't forget about me....I'm 4 months old today!! Time flies....