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....

Kindergarten has begun!

Oh wow, where has the time gone! Carson and Kellen have almost two weeks of Kindergarten under their belts and Brody and I are still trying to get adjusted to not having the boys with us all day.

Carson and Kellen are really enjoying school. I think they miss being together all day but that makes recess all the more sweet...when they get to play together! They've told me that they do miss Brody and me but I am so thankful for their love of learning. I hope they continue to enjoy school! Don't get me wrong, mornings are a bit rough...having to get up early and then actually get ready and not take our time but when I pick the boys up from school, they are practically bouncing up and down trying to tell me ALL that they did that day. And let me just tell you, waiting in the car line and seeing their heads just peeking over the wall and then when they see my car and the smiles that light up their faces, THAT has to be one of my favorite moments of the day!!
Carson has an aide that is with him all day...to have eyes on him at recess, at lunch, etc. so that if something were to happen to his trach we wouldn't lose much time. I am so thankful for the aide he has!
So...with the start of Kindergarten, came the realization that my prayer for the last 3 years (at least) wasn't answered. So, while I also had some of the emotions of sending my kiddos off to school for the first time, realizing that I wouldn't have the majority of their time anymore & that in fact I will likely have less and less as time goes on, and that once school starts, I never get my time with them at home back, the bigger emotion was honestly, anger. Anger at God, I guess, that he hasn't chosen to heal Carson yet, that while I tried to be patient with the numerous surgeries in the past, Carson is still having to go to Kindergarten with a trach. And not only that, but we started capping his trach at night time about a week before school started (this is the last step before decannulation -taking the trach out) and while I should be excited. I'm not all that confident that Carson is ready for the trach to come out. We noticed snoring and increased work of breathing at night time when he is capped. His vital signs remain stable but he has to pull harder for breaths at times. It is frustrating and discouraging. And while I say all these things, I know I should be (& am) thankful for the gift of Carson's life. He has made improvements & above all, we HAVE Carson. But if I'm being honest, I am tired of being patient! So, while I kinda just wanted to ignore the snoring and the increased work of breathing and act like all was fine. I knew I couldn't. We took various videos of Carson sleeping/breathing and I sent them to Cincinnati. We will have another sleep study Sept 5th in St. Louis. I don't expect great or improved results from the last study but I do agree that another sleep study is important. And then we will just take the next step next. Trusting that God's plan is good, knowing that he loves Carson immensely more than I do, and continuing to hope for a miracle!
We appreciate all your prayers along the way and in the future. I do ask for prayer for safety for Carson while he is at school, for a good, accurate sleep study and for the scope that will be in November (that Carson will be healthy when it is time to go- he has already brought home his first cold of the school year :/ ) And prayer for me to truly just TRUST God and enjoy the moments and to continue to hope & believe in miracles. I've seen them...is it so wrong to want another?? ; )

For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.
Jeremiah 29:11

Another skate park (that is only 30 minutes away)

 FIRST DAY OF KINDERGARTEN!!!!

After school ice cream at our local drug store!

Celebrating Mr. & Mrs. James & Jordan BUNCH!

A sneak peak from some pictures we had taken...look at the smirk! (He knows he's got us wrapped around his finger!)

First Bearcat Football Friday!!

My heart is FULL (& my lap : )

Perfection in a picture!!

6.12.2017

Brody.

Today was your due date. Yet we’ve got to enjoy you for 4 weeks now. And I thank God everyday that you are here. And that you are healthy. As we found out, things could have gone much differently. While we were headed to the hospital to have you, I was wishing to let you be for awhile longer because you seemed so cozy. Yet, as we would find out, my uterus [your lodging, at the time] was basically ONE cell layer from rupturing which would have thrown everything in to an emergency situation and who knows what the outcome would have been for me & you. So I thank God for guiding the doctors on the best time to deliver you!!

I still occasionally feel like it is all a dream. How could I be so lucky (so blessed) to get to do this motherhood thing again and that we are getting to experience so much of the normalcy of a baby!?! Carson & Kellen’s journey definitely molded our perspective and I am just SOAKING up this time with Brody…it makes me a little sad to think of all the snuggles and downtime we missed with the boys yet the perspective we gained helps us enjoy all the little moments a bit more. It is such a wonderful feeling to have all three of our boys in our home together and to see Carson and Kellen enjoying the many aspects of being big brothers!

My WHOLE heart in a picture!

P.S. Carson and Kellen have continued to do well at summer school and we have not had any incidents with Carson's trach. The early mornings are a bit rough for the boys and often include many..."I don't like school"s "I don't want to go to school"s but by the time I pick them up...they can hardly take turns to tell me ALL they have done. We have been counting down the days until it is over : ) This is the last week for them because we have a couple appointments in St. Louis the beginning of next week. We are going to see the feeding team at Cardinal Glennon. I'm praying for some insight as to how to progress Carson to total oral feeds (if they think its time to just cut out all tube feedings & let him figure out hunger/appetite or if there is more that needs to be done before that).

1 week old

Our first walk...do you see the big boys up ahead. We just couldn't keep up!

All three boys' first bonfire!

But not our first rodeo with s'mores...we've had that goodness before!

"Fun day" with Nana & Brody

First campout [in our backyard]...they loved it! And big props to Preston for enduring the endless excitement & little sleep!

Mr. Brody broke 9 lbs this week!

Yay for tball games [& fans]! The boys may not look excited but don't let their faces lie to you...they've enjoyed it!