Happy Spring!

Yet again, it's been a while since my last blog--my apologies, our dear faithful followers!

Here's the haps:

We've found our inner artist..

We've trotted around on Trigger..

And explored in our playground fort..

We've taken Pappy on a dirtbike ride..

We've petted puppy dog noses..

And learned that legs are made for standing..(!!!!!!!!!!!!)

We've watched soccer games (on a chilly day)...

We've tried out the swings at Lake Reba..

And at the Choo-Choo Park..

We've had our 18 month check-up...

(We love the thoughtful staff at the Children's Clinic!)

We've done lots and lots of wagon-riding (and cute-face-making!)...

We've watched the parade at the Mountain Mushroom Festival..

And loved it!

We even made it to church for the very first time!

As you can see, we've been busy! And we are thoroughly enjoying SPRING!

Clay absolutely loves to go 'bye-bye' (his favorite word!), and I feel that we owe him a change of scenery when we have the opportunity. I believe we have all gotten a little stir-crazy in our 'corner' all winter (I am positive that I have!).

As far as the details:

-Clay is TOTALLY being fed into his stomach now, we even got his GJ-tube switched out for a regular G-tube. Which is awesome! (Especially because we've accidentally pulled his tube out a few times since the switch...thank goodness it's no big deal to pop a G-tube back in!)
-We are currently doing 4 bolus feeds a day, so it's more like eating regular meals, rather than continuously being fed all day. We're working on a faster rate for him. He currently gets 300mls over 1-1/2 hours, but we're trying to work our way up to 30min. It's already proven he has some issues if we push him too much (lots of puke, projectile style..zero fun).
-As far as eating by mouth...we've still got a long ways to go but he is showing encouraging progression! He seems to really like tasting things, so we've let him lick on a few things.. apples, bananas, salt & vinegar chips and bacon, to name a few (don't judge!), if the tongue-smacking is any indicator, he enjoys them. But he usually ends up breaking a piece of the food off in his mouth, which results in a gagging fit. It seems to me that he is scared and unsure of what to do once the food is actually in his mouth, so he freaks out and gags--which is totally logical--he's never had to eat by mouth! I'm sure it would be a scary new thing to learn. But we're working on it!
He gets SO excited when I turn his feeding pump on for a meal. Before I hook up to his g-tube, he loves to put the end of the feeding tube into his mouth and wait for me to run a little bit of food through to him. He'll smack his tongue and squeal like a piggy! A lot of the time, he lets the milk run out of his mouth instead of swallowing it, but some of the time he swallows it. Like tonight for example...(I'm hesitant to tell this b/c I don't want to jinx anything!)...but he was especially enjoying the 'bites' he was getting through the tube, so I put about 10mls in a bottle to let him try. He took every bit of it! He chews on the nipple of the bottle rather than sucking, but he was still allowing the milk in his mouth and swallowing! Y'all say a prayer that he'll get the hang of the whole 'eating thing'. What a wonderful day that will be!
-We have also been okay-ed to do some blended food through his tube! Yayaaaaa! I'm so happy about this. So far, he's had banana, avocado, broccoli, cauliflower, carrots, sweet potatoes, applesauce, spinach, eggs.. a pretty good start! My goal is to transition to a total blended diet eventually. The blended food does still go through his tube, so I've had issues with getting the consistency just right. It's a learning process! I will admit how much EASIER powdered formula is, though.. Like, SO much easier. But not nearly as rewarding or nutritious...that's what I keep reminding myself! The blended diet will get much easier with time & practice, I'm sure.

-We had our 6 month review with the First Steps program a few weeks ago...we looked over the goals we had set for him initially and made new goals for the next six months. It was amazing the progress he had made! We were actually discharged by the developmental instructor, because there ain't a thing wrong with this boy's cognitive abilities. He's sharp as a tack! ;)
-We were able to pick up speech therapy, I'm so thankful! She comes every week and she is great. We are working on lots of communication skills. He does babble and talk quite a bit, but he mainly makes the 'B' sound...nearly everything he points at is a 'ball' or a 'buh' or 'bye-bye'. Here lately he's added in some 'M' sounds--I tell ya, a 'momma' sure is nice to hear coming from this boy's mouth! We're working on sign language too and he's doing great! We've been doing the signs for 'ball', 'more', and 'go'. If you know signs, you know all of those signs are somewhat similar...so he kind of ends up doing a mix of all three when you ask him to tell you one...but at least he is learning that signs have meaning and that it's a powerful way to communicate.
-We are still getting physical therapy twice a month and he's making lots of progress! She did bring a stander to help him learn to bear weight on his legs:

Yeah, what a contraption, right? I feel a little cruel strapping him into that thing. But thankfully, I haven't had to use it in a few weeks--it must've done the trick, because he has realized legs are made for standing (see proof above!). He hasn't learn to pull up and stand on his own yet, but when we place him in front of something that he can hold on to, he will stand for a bit. I'm so proud! He has made such progress in the past few months, it's crazy! Can't wait to see what he learns next :)

-As far as his breathing goes, we're still hanging out with the ventilator, on the same settings we were discharged from the hospital with 10 months ago. We have an appointment with his pulmonologist on May 7th, and I expect them to do some weaning or give us the go-ahead for some trach collar trials again. I am confident he would do well with some changes. Despite being on a ventilator 24/7, it's hard to think of him as 'ventilator dependent'. When his vent circuit disconnects (which it does regularly now that he's mobile), it just doesn't seem like a big deal. In fact, he will scoot over to the ventilator and push the flashing red 'silence' alarm button, that way we don't hear the beeping sound alarming us that his circuit is disconnected, haha! The little stinker even turned his ventilator completely off the other day, so maybe he's trying to tell us something!?  Again, please say a prayer his little lungs can handle things on their own, without mechanical assistance...and that the transition off of the ventilator will be smooth and uneventful!

-Clay is also scheduled to have a sedation MRI and ECHO done on May 29th. It is going to be an outpatient procedure (which I am thankful!). The MRI will be done on his head, as a follow-up to one he had in January 2012, while in the NICU. His head is larger than the average bug's, which is concerning to one of our doctors, so she's requesting it be followed...but his head has always been big, even in-utero, so I'm not concerned with it. I'm choosing to believe his big head is because of his big brain=the next Einstein! ;)
The ECHO will be done to hopefully get a better picture of the pressures in his heart, to see if his pulmonary hypertension is still present. This issue could really use some big prayers. Pulmonary hypertension is the killer of CDH babies...and it's not just babies... I just read today that a 37 year old CDH survivor recently passing away due to complications with life-long pulmonary hypertension...all cause by the diaphragmatic defect that he was born with. Very, very heartbreaking news.
Please pray that Clay's brain, heart and lungs are all functioning perfectly, just the way they should. I am hoping & praying for good things on May 29th. I will update when we learn the results!

Well, I think I've covered everything newsworthy. I'm sure you can tell by the pictures how much of a joy Clayton Cash is to us...and yes, for those wondering, he really is always as happy as he looks in the pics! He has such an infectious, wonderful spirit.
I'm so happy we've been able to get out and meet a few of our most faithful followers in person. I'm brought to tears nearly every time...you all have no idea how much the love & support you've shown our family throughout the past 18 months mean to us! We love you all!

Now, get out and enjoy life, y'all. It's too beautiful not to!

Love & peace from the Eaton's xoxoxo!

Things always have a way of working themselves out...

I hardly know where to begin, there's a lot of good stuff happening around here!

We got our curls cut off a couple weeks ago :(

But he's still just as handsome as ever ;)

First of all, I am so so so glad we decided to postpone Clay's Nissen Fundoplication surgery. Because................he has been tolerating his G-port being clamped throughout the day and is even tolerating some G-tube feeds!!!!!!
For those that need refreshing: back in May, when he had the G-tube placed, we learned that his stomach had an unnatural bend in it that caused the stomach contents to not empty into his intestines; Clay would puke if the littlest amount was in his stomach. Because of this, we had the GJ placed, so we could feed his jejunum, while we drained to the G-port to keep saliva/stomach juices/bile off his tummy so he wouldn't puke. So that's how we've been operating--20 hrs/day continuous feeds through his J-port and constantly draining his G-port.
Just by accident (or divine intervention), I forgot to unclamp his G-port when changing out the drain bag attached one night--which means no stomach juices could escape his tummy. Eric noticed about 8 hours later, and he suggested we leave it clamped throughout the day. I was apprehensive, I'll admit...but we ended up leaving it clamped for about 26 hours straight and Clay didn't puke once!!
So, I emailed our surgeon, to see if he would be okay with us trying to feed his G-tube. He agreed and recommended starting off with 4 hour trials...we've worked our way up to 7 hours today and I'm so happy/excited/relieved to say he's done excellent! No pukies at all!
The goal will be to get him totally off the J-tube feeds and then we will try to work up to doing bolus feeds through his G-tube. If he tolerates bolus feeds, the Nissen surgery will not be necessary. That thought makes me so happy I could cry. Y'all please send Clay's tummy some prayers and good vibes...he can do this, I just know it!

We also had appointments with Clay's pulmonologist, nephrologist and cardiologist last week. I'll just go into a big, long explanation of them all since I feel like I've left you all out of the loop the past few months..

- Nephrology: We see the nephrologist because Clay has a history of high blood pressure. The cause doesn't seem to be related to one thing specifically; the doc says it's multifactoral and not necessarily an issue with his kidneys. But still, we are followed by them. Clay takes a dose of Enalapril once a day to help combat the high blood pressure. When we seen the nephrologist Wednesday, he thought Clay looked great and didn't think a urine sample or kidney ultrasound was necessary--which I was thankful--Clay was already riled up enough after the numerous attempts to get his blood pressure. Docs plan is to let Clay grow out of his medication, rather than 'rock the boat' and wean anything. Sounds good to us! We see them again in six months.

- Pulmonary: We had a different pulmonologist this week at clinic, not our usual Dr. Anstead. But he was nice and also thought Clay looked great. He fooled with Clay's ventilator and turned the rate off for a few minutes to see how Clay tolerated it, and he didn't mind at all--which I knew he wouldn't. The ventilator rate (breaths per minute) is set at 6. Clay usually breaths 40-60 breaths per minute, so the ventilator isn't doing a thing in that regard. But the doc didn't want to make any changes right now--with our surgery still in the books for March, he wanted to get past that first and then we can start weaning some settings as long as Clay is up for it. He didn't find it necessary for any labs or x-rays, since he has been doing so well. Sounds good to us! We will see them again in a couple months.

- Cardiology: We are followed by the cardiologist because of Clay's pulmonary hypertension and his (questionable) narrow aortic arch. Every time we see them, we have an ECHO to try to get a check on the pressures in his heart, but every time Clay is being ornery and won't let them get a good picture (can't say that I blame him). So this time, we opted out of torturing him with the ECHO and decided to schedule a sedation ECHO within the next couple of months. If we end up needing the Nissen surgery we will coordinate with that, if not, we will schedule it separately. We really need to get some good pictures to see if his pulmonary hypertension has resolved. Clay has been off of Sildenafil (aka, Viagra) since the beginning of December because our insurance decided they wouldn't pay for the $500/month medication. Well, we sure as heck couldn't pay for it either, so he has been going without it. I think it's pathetic that the insurance company made the decision instead of the doctors...but hey, there'd be no way in this world we could pay for our 2 million dollar baby (and counting) with out the insurance, so I don't guess I can complain too much. And thankfully, I have not noticed any changes in Clay since he has been off the medication. He's just as happy and playful as ever! We are leaving him on 2 liters of oxygen just in case he may have any unresolved pulmonary hypertension. Anywho...it's up in the air about when the sedation ECHO will be, but it'll be sometime in the next couple months.

So, that's the 411 on his recent appointments...now to fill y'all in on this boy's developmental progress!

We've been having in-home sessions with First Steps since October-ish. At first we couldn't get any OT, PT or Speech Therapy out here--our service area was limited because of the location. So we've been working with a Developmental Instructor. Her job is mainly focused on cognitive development...she's given me a few good tips and suggestions to try with him, but honestly, she doesn't do much more than I already do with him, so the therapy has kind of been boring. At our NICU Graduate Clinic appointment back in November, they referred us to Physical Therapy but we were going to have to take Clay to a clinic in Lexington a couple of times a month for those services. But.....we got a call a few weeks ago and said they found a PT provider willing to pick up our service area...so we now have a PT coming in-home twice a month! Yay!!!
We had our first session on Monday. AND I LOVE HER! It literally brought me to tears after she left...she answered so many of my questions and gave me so many good things to work on with Clay. She was so nice and so knowledgeable and we just clicked...what a relief and such a blessing to have her help! I think Clay liked her too, but he got a little ornery with her because she was making him work, lol.

She was overall very pleased with how he looked. Of course, we just need to get him stronger. Just until the past couple of weeks, Clay has pretty much refused to bear weight on his legs...he'd just draw them up like a little froggy. But now he is willing to put some weight on his legs and will stand up good when he wants to (have I said he's ornery?). The PT (her name is Amber) said he has a lot of range of motion in his ankles, which she is afraid will make it hard for him to stand...so she thinks leg braces may be in our future. First she is going to try to get us a standing frame. I googled it and this is what I found:

I think it'll be really good for him!

Like I said, just within the past few weeks Clay has really seemed to take off. He has sat himself up from lying position two different times now. He really reaches for things and scoots himself around spins in circles and gets his self all tangled up in his tubes and hoses, lol!
He is such a little busy body with his toys. He loves to play and it's the cutest thing when he gets focused on a task. I just love to watch him learn.
He still loves books...he 'bout wears me out wanting to read so many books, lol! But I love it...his favorites are The Little Blue Truck, I Love You Stinky Face, and any of the books that mommy makes animal noises while reading, ha! He really is the most content and happy baby. I am so so so blessed to be his mommy.
As far as his oral aversion goes, I think he is slowly but surely overcoming! He always has something in his mouth, be it his fingers or toes, his toys or his tubes, lol! I have also been giving him pieces of my apple or banana while I'm eating, just so he can explore and get used to different textures. He usually does end up sticking it in his mouth and he doesn't seem to mind the taste! He gets a little freaked out if he bites off a piece; he usually gags if this happens and I quickly get it out of his mouth. I've given him little tastes of my homemade yogurt and he smacks his lips and acts like he likes it!
I am so anxious to give him real food. Even if it is a blenderized diet through his G-tube. I know that real food will do him a world of good. It just makes sense to me that he would get stronger and his body would heal so much better if he were getting quality nutrition. The formula he's on is obviously doing a pretty good job, but I know real food will be so much better. Especially produce from our backyard (and Nana & Pappy's), eggs from Nana & Pappy's chickens (hopefully we'll be getting some chickens too soon!), butter & milk from Uncle's cow, REAL FOOD!
We all need real food. I've been learning a lot about nutrition lately, thanks to a book called Nourishing Traditions and a membership to the Weston A. Price Foundation. If you have any desire to eat healthy and feed your family good quality food, I highly recommend that book and that foundation. It is truly life-changing. I am by no means following a true WAPF diet yet, but I have really been trying to cut out the processed junk, the sugar and the empty calories and I have lost about 10 pounds and feel SO much better. I have so much more energy and am just altogether happier. Once Clay is getting fed totally through his G-tube, you best believe I'll be giving him the same good stuff!

So many good things happening around here, we are so blessed. Next week, it will be 8 months since we brought Clay home. His first 8 months in the NICU felt like a lifetime but the past 8 months at home have flew by! It is absolutely amazing the progress he has made. Thank you all for cheering us on every step of the way. We love you all and hope to update with lots of more good news soon!

Xoxoxo!

:)

 

Nissen surgery postponed..

Clay was scheduled to have the Nissen Fundoplication surgery this coming Tuesday, January 29th. I've been dreading it more and more everyday...both the actual procedure, but more so for the 7-10 day recovery in the PICU (or more, knowing how things usually go with Mr. Clay-bug).
With the flu and RSV and all these nasty bugs going around, it's no place for a baby with lots of medical issues to be, unless absolutely necessary. So I ended up emailing our surgeon yesterday and told him of my concerns--he agreed, and we've rescheduled for March 12th.
So, I'm relieved for the moment. But it's got me feelin' like a college student again...when the professor pushes back a deadline for a big report, then you dread it even more in the end. Regardless, I think it's a better choice for Clay. He's thriving at home, no issues with his GJ feedings (*knock on wood*)...it would probably be crazy to bring a child like Clay into the hospital for a non-emergent surgery at this time of the year.
Y'all please say a prayer this works out for the best and that Clay will continue to thrive and stay healthy. He's still hammin' it up around here--we are so thankful for his sweet smiley face.
Thank y'all for keeping up with us...we appreciate the support more than you'll ever know!
Here's a few pictures of the silly boy:

Him's bad to the bone..



Big boy in the tub!

Reckon it's time for a haircut?

Lots of love & peace to you all!
XOXOXO

Happy Holidays!

It was a very Merry Christmas here in the hills...so thankful that our sweet boy was home with us to celebrate this year.

I've been such a good boy :)

Clay didn't seem too interested in ripping the paper off the presents or even what was under the wrapping, but he sure was all eyes...just watching all the madness :)

He got to visit with lots of family & he entertained us all with his big cheesy grins. I cannot say it enough, this child is a HAM!

Yep, I'm a HAM! ;)

He doesn't meet a stranger and takes up with anybody. He is the friendliest baby...and the happiest.
Even though we do have a lot of extra 'stuff' to deal with, he really does make it easy on us. We are SO SO blessed.

I'm also thankful we've managed to keep him healthy so far this cold/flu season.. *knock on wood* We've all had our flu vaccines and he's gotten two rounds of his RSV vaccinations, so hopefully we can keep it up!

There's not much new medical stuff to report, we didn't make any changes with his ventilator settings or anything at his last doc appointment. We have an appointment with Dr. Draus, our trusty ol surgeon, on Friday the 4th...we'll be setting a date for the Nissen then.. I dread it :/

We have been trying out the Passy-Muir valve... which is a valve that connects to the vent circuit & forces him to exhale air out of his mouth/nose instead of his trach. The PMV is also supposed to make it easier for him to talk. It is an adjustment for him, as you can imagine. But he does pretty good with it, although he talks a lot more WITHOUT the valve! He's learning to say 'ball' and 'bye-bye' and it's so stinkin' sweet!

He loves looking out our window at the neighbor's horses in the field. And he loves to see our dog too. We're planning to get a puppy in a couple of weeks and I can't wait to see how he reacts to it!

My little Clayton Cash is such a joy. He never cries, but here lately, when he's sleepy, he cries for his mommy. And I can't help but feel so happy. So many times I've wondered if he knows me as his mommy, but I think I can now rest easy :) I know I've got him rotten, but I can't help it!

He is my world <3

The very best Christmas present!

I hope your holidays have been filled with happiness & love and I wish lots of blessings for the New Year.. Bring it on 2013! ;)

XOXOXO!

Just a lil update...

Figure it's about time for an update, since it's been over a month!

I swear, this child of mine is a CLOWN! He keeps us laughing with his silly faces and little games. He loves to make people laugh. I love it! One of his favorite things to do now is cross his eyes at me. Such a goober!

He's been getting into everything lately. Even though he's not mobile, I still have to keep a very close eye on him! He's discovered the whole 'cause & effect' thing. He'll yank on his feeding tube & watch it shake the med pole. He's yanked on his ventilator circuit too hard & pulled the humidifier chamber off the shelf, which spills water into his circuit, which about drowns him--no good! So we had to bungee cord the humidifier to the shelf so he won't pull it off...the little rascal!

He's made big strides developmentally in the past few months, with no formal therapies, but we had an appointment with the NICU Grad Clinic last week, and they referred us to Physical Therapy & Speech Therapy. We can't get them in-home (one disadvantage of living in the boonies), so we have to travel to an office, but I know it'll be worth it. Even if we just visit them once a month, they can give me things to work with him on at home.

We go see Speech Therapy on Wednesday, the 13th, and I'm really excited--we get to try out a Passy-Muir valve. I'm not totally sure how it works, but it's a valve that will allow Clay to 'talk' with his trach. He already does a good job of making noise around his trach anyways, so I'm sure he'll do great with the new valve. I'm excited at the thought of getting to hear him laugh. I bet we won't be able to get him to hush! ;)

We also see Clay's pulmonologist on Wednesday. Even though it's been 3 months since he caught that nasty pneumonia, we're still feeling the effects of it. He still requiring about 2 liters of oxygen, compared to the 1/2 liter he was on before...and he still works harder if the vent becomes disconnected. So I doubt any changes will be made at his appointment. Which I am okay with, I just want to make it through cold & flu season with no more illnesses. Please say a prayer we can do it! Then maybe this Spring we can start doing trach-collar trials again...

Another thing on our radar: surgery #9 (or is it 10?).. We met with Dr. Draus, our surgeon, a few weeks ago and we talked about going ahead with the surgery to fix his stomach issues. Dr. Draus also recommended going ahead with a Nissen fundoplication, which will help with reflux and keep him from aspirating. Click Here for more info on what a Nissen is, if you're interested.

We're scheduled to meet with Draus again at the beginning of January, and we'll set a date for the surgery at that meeting. It'll probably be another very invasive surgery and another week-or-two-long PICU stay...I'm dreading it, to say the least. But it will be nice to get rid of the J tube & start feeding his stomach. Then we can start working on oral feeds--which I know will be a battle all it's own--but we'll get there eventually!

Y'all say a prayer for my Clay-bug. He's been doing really well and acting like he feels so good. Pray we can keep him like this! We would love to have Christmas with our baby at home this year :)

Lots of love & peace to you all! XOXO!

A very thankful Birthday Eve..

I'm so happy to say we made it back home this afternoon!

Clay has done great with feeds into his new GJ tube & seems to be feeling just as fine as frog hair ;)

Me, well, I've just been emotional all evening...

This time last year, I would have never in a million years thought that Clay would spend the first 8 months of his life in the NICU, that he'd go through 8 surgeries, that we'd come home with a trach & a ventilator & a GJ tube...in my hopeful mind, Clay had a 'mild' case of CDH, we were going to be home by Thanksgiving, and after the repair surgery, he'd be a perfectly normal baby.

But knowing now what I didn't know then, I can honestly say that I would not trade a thing.

We've been on all sorts of twists & turns in the first year of this CDH journey...but today, riding home in the back seat next to Clay, embraced by the beautiful colors of autumn, hearing his sleepy breaths echoed by the ventilator, seeing his busy little feet wiggle & roll, feeling complete & safe in Eric's company...today, we were just cruising along...just along for the ride & it's just a feeling I don't ever want to forget.

We came home to a house full of sweet gifts from Clay's birthday bash and I finally got to look through all of the birthday cards from so many of our family & friends. My eyes filled with tears with every sweet note in them. I know Clay is so special to so many, and I just can't express how much that means to me.

Nana & Pappy brought us soup beans & cornbread for supper and helped to get us settled back in, and of course, spoiled a silly little boy rotten. I just don't know what I'd do without them two.

When Clay was ready for bed, I rocked him, and like always, he reached up to rub his little thumb across my eyelashes until he drifted off to sleep. THAT is the absolute sweetest thing ever. THAT is what makes every bit of this past year worth it.


Tomorrow, on Clay's first birthday, take a minute to be thankful for the life & the health you were granted...because those are things that are not guaranteed to us all. I think Clay has shown us that this life is worth living & living well, no matter what ails us! ;)

Thank you all for embracing our family, for supporting us & standing by us through the twists & turns of Clay's first year...and for encouraging me to share our journey.

It's been a good year :)

GJ tube is...

..IN!!

They got it in!!

After two hours of manipulating the tube through the kinks and curls of Clay's messy anatomy, they were able to get the J portion of the GJ tube back into place. Yay!!

But, they're afraid they didn't get in perfect placement...so guess what?! We're here another night :/

We're going to start feeds back soon, and wait for the lil wildcat to wake up from the drugs--which they had to give lots of--They'll shoot another X-ray in the morning and if all looks well, THEN we may get outta here.


Thank you all for the prayers and good vibes today! They mean so much to us <3

Lots of love to you all!