Choosing faith instead of fear.

Holy smokes, we made it a year...one year ago today, we were bringing Clay home to the hills for the very first time.

Can you say proud? 'Cause that's what I am. I have kept my baby alive, and I'd even venture to say thriving, at home, with a ventilator, oxygen and a feeding tube. Yes, yes, yessssssssssssss, I'm proud.

I guess it's normal coping behavior to 'put the blinders on', so to speak, when you're faced with adversity. At least that's what I do...and that's what I feel like I've been doing for the past 2 years. I've focused on the positives, looking ahead to the light at the end of the tunnel. Always grateful for another day, but praying for a better one to follow.

When I first learned I was pregnant with Clay, I decided to keep a journal and write letters to him. I was 7 weeks pregnant when I wrote the first letter, having no idea if he was a boy or a girl, and absolutely ZERO idea he would be born without a diaphragm. Heck, I had never even heard of CDH ever in my life... Until June 13, 2011. That's the day Clay was diagnosed with Congenital Diaphragmatic Hernia, and that's the day I put on those blinders. Looking back now, those following 20 weeks of pregnancy were some of the most fearful; the uncertainty that comes with the CDH diagnosis is the absolute worst. But with my blinders on, I would seek out the stories of the most mild cases of CDH & told myself that was how Clay's would be...we'd come home a couple of weeks after birth with a healthy baby.

But as you all know, that wasn't in the plan.

Clay was so sick when he was born. Thinking back to his first couple of weeks of life, I'd say some people thought I was delirious at times and not realizing the severity of the situation. But I did, I just had my blinders on...I chose faith instead of fear. He had to get better because the alternative was not an option. One day, I'd be bringing my baby home.

And 8 months later, we did. What a sweet, sweet day that was.

Still, bringing him home with a ventilator, oxygen and a feeding tube is not how I pictured our homecoming to be. With my blinders on, I've focused on the day Clay would no longer need mechanical assistance. One day, it will happen. All he needs is time and lots of love.

Good thing we've got lots of both up here in the hills.

As I sit here writing this, Clay is scooting around all over the house--no ventilator attached. You see, at our pulmonology appointment last week, we were given the OK to discontinue his oxygen during the day (which is completely awesome in itself--that's one less thing tying us down!). We were given instructions to wean his PEEP setting on his ventilator from 7 to 5, then if he tolerates, wean his Pressure Support setting from 12 to 10, then if he tolerates, start doing trials off the ventilator again. Thank the good Lord, he has tolerated all of those changes very well. We started doing trial-offs on Monday and he is doing great. Our 30 minute trial off turned into a 2 hour one, because he was not about to let us tether him to his vent again. I will hook him up to the pulse oximeter machine every little bit to check his oxygen saturation levels. And they're great. No oxygen, no ventilator, satting 94-97. Someone pinch me.

I'm starting to peek around those blinders and catch a glimpse of what our lives will be like sans ventilator. And it's a beautiful thing.

We still have a ways to go until Clay is completely tube free, but we are well on our way.

I want to share with y'all a little bit of the letter I wrote to Clay on the day we found out about his CDH diagnosis, over two years ago...

It sounds like CDH is a really serious problem, but there is no doubt in my mind that you're a fighter. I've prayed from the beginning that you'll be a strong one--and I don't believe He's gonna let us down. You may get off to a rocky start, but I just know you'll make it through & have a  great story to impress the ladies with one day ;) ...You have no idea how much I love you already. I'm scared to death, I'm not gonna lie...but I'm gonna have a positive attitude & pray so much. And so are so many others. We can do this little guy. Let's show 'em how strong we are & kick this CDH thing right in the ass!!!!!

And we are doing just that, my friends.

And just in case you want to reminisce with me on that beautiful day we brought Clayton Cash home, click on the links below to check out the three videos my wonderfully talented friend, Dustin Stevenson, at Dustin Stevenson Photography made for us.

Part 1
Part 2
Part 3


Lots of love & blessings to you all, beautiful people <3

Results are in..

Well, both Clay and Mommy have had our fair share of laughing gas and sedation drugs the past couple weeks. Clay, with his sedation MRI, ECHO and chest X-rays last week, then I had my wisdom teeth pulled yesterday. (Blahhh!)

But since I've been a little laid-up, I figure nows a good time to finally update y'all on the results from Clay's procedures. Thankfully, all came back pretty good!

The chest X-rays showed that things are still where they're suppose to be, which I was relieved to hear because Clay hasn't been tolerating feeds as well lately...but I'll get to that issue in a bit.

Everyone always asks how his lungs look, if they've grown, etc. While the X-rays do show a picture of the lungs, it can't necessarily show how well they are actually functioning. I've come to understand that's why the doctors don't make a big deal about shooting X-rays every time we visit. Unless something is concerning to us, we leave it alone...In fact, this was our first X-ray in 6 months! He is breathing comfortably, even with some recent weans to his ventilator. So we're very happy with that!

The ECHO on his heart showed that things are functioning properly. While pulmonary hypertension can't specifically be measured in the ECHO, they can see how the heart is pumping and can look for indicators that pressures are high, such as having an enlarged right ventricle and having septum flattening. But thankfully, things looked good! This is especially great considering he's been without Sildenafil, which treats PH, for about 6 months now. Now, we can really get to work on weaning the ventilator and oxygen! We have an appointment with pulmonology in a couple weeks. Pray he will have great progress this summer! 

And finally, the MRI showed that Clay does still have some fluid build-up around his brain. The doctor also said his brain is actually a little smaller than normal, but said that both of these things are common in children who have been as chronically ill as Clay. She said it was something they would continue to follow, but nothing they wanted to treat right now. As I've said before, I am not the least bit concerned with his noggin'. He is learning new things everyday and surprises me all the time with his progress! Big head, little brain, whatever, my boy's a very smart cookie and I'm not fretting that the results from the MRI weren't perfect. I'm just thankful it isn't causing us issues! 

And speaking of learning new things, he has been doing so incredible picking up sign language. Omg, it is the cutest thing ever! Our speech therapist is very pleased with his progress too. She is very impressed with his word associations and also how well he does with sensory stimulation. We've been doing fun things like finger painting in pudding, playing in homemade play doh, and playing in rice...She says he is doing exceptional, especially considering how long he was in the hospital. I am so proud of him, I could bust! 

Our physical therapy is still going very well also! He is doing really well standing and is learning to pull himself up, too..He is even taking steps with his little feet and its the sweetest thing ever! (Doing all these things with assistance, of course.)

We went last week to be fitted for ankle braces. PT recommended them because when he stands, he rolls his little ankles in and also hyperextends his knees, so the ankle braces will provide him with more stability and will help his muscles to strengthen in the correct positions. 

The only thing that's been concerning lately is Clay's been having the pukies a lil more, and he's been losing some weight.  He was at 22lbs at the last appointment we had with pulmonary, (he weighed 26lbs at his heaviest, back in November--which was almost considered obese for his age and was a lil concerning b/c carrying around that extra weight can affect his breathing capabilities--so we switched up his feeding regimen to slow him down.) So since the feeding changes back in November, he's slowly lost weight.. Some of which I contributed to him being so much more active nowadays. But the fact his weight was never leveling out and he continued to lose was starting to concern me and was also concerning to our pulmonologist, so we met with the dietician and she recommended taking his feeds to a higher calorie. The good news is that he's been gaining, and is now around 23 lbs. The bad news is that we've had to go back to nearly continuous feeds because if we try to increase the rate, he has major pukies. I'm wondering if it's him adjusting to the higher calorie food, or if it could possibly be related to his slight congestion lately. He's had a lil cough and I've had to suction a lot more lately...and when he pukes, his vomit looks mucous-y (sorry for the visual). Whatever's been going on has thankfully calmed down over the past couple of days, so maybe we're on the mend and can start to increase his rate again--this continuous feeding is for the birds. Y'all send some positive thoughts & prayers for that to be the case! 

Here's a few pics of the latest:

Clay's first swim! As you can tell, he loved it!

Watching the Legend's baseball game!

Look out, Clay's at the wheel!

He sits like this all the time...it's the cutest thing!

Celebrating Uncle Eli's graduation--Clay adores Uncle Eli & can say his name so well!

Doing what he does best--pulling out allllllll of his books :)

Three Miracle Men, reunited: Mason (also born with CDH), Clay, & Hunter (a 23 week preemie).

 Trach buds!

Gettin our feet wet at the creek!

Sweetest thing. He LOVES throwing rocks in the water!

Playing in pudding with our speech therapist!

Thank you all, again, for your continued prayers and love and support. I don't know how else to say it...you all are the best!

Here's to a happy, healthy summer for everyone! Enjoy!
xoxoxo

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!