Tuesday, November 19, 2013

My two year-old Clay.

I know it's been foreveerrrr since I last updated--I forget a lot of people only check my blog and not my Facebook posts--so I apologize (especially to you, CDH friend, Raelyn!)! But I can assure you things have been great with our big ol boy!

My last post was about Clay's puny-self after the Nissen surgery last month, while we were still in the hospital. So to catch y'all up--he ended up with a respiratory infection that left him on antibiotics for over week--we were able to finish them up at home via broviak, he was on a little extra oxygen for a week or so after we got home, but things have been fine & dandy since then!

Now that all the recovery is behind us, I am so happy that we had that Nissen wrap. Clay will still wretch occasionally but the Nissen prevents food from coming back up, so he's keeping down all his calories and is gaining weight!!! He's up to 25lbs, 8oz now...yayyy!!!! He also just acts like he feels so much better. Thinking back, I can tell now that he was probably in a lot of pain from all the reflux he was having. I was just blaming his extra-sensitive & clingy behavior to a normal toddler phase. It's just so hard to know sometimes! Thankfully, he is giving me a break from the worrying and I've just been able to watch him learn & grow.

It's just so amazing to see the world through his eyes. He notices every little thing, every new sound or sight. He'll get all excited and make this face:

(This pic was pre-haircut. Aww, I miss those curls!)
He'll click his little tongue too, to get our attention. He sure is an expressive booger.

And so thoughtful.

We celebrated Clay's 2nd birthday with a party with lots of friends & family! It was a beautiful, wonderful day.


As you can see, Clay had a good time too :)

Clay's toddler days are keeping me busy! He still scoots everywhere he needs to go, on his bottom. He's doing better about spending some time on his knees but still doesn't crawl. He can pull himself up to stand & he'll cruise along side the couch or ottoman. Boy, is he getting active. Tonight, we wallered all over the bed, doing somersaults and practicing standing on our own (he's much braver on the bed). He's making a lot of progress and will be walking on his own soon at this rate!

While we were in the hospital Clay had a barium swallow study done to make sure that when he swallows, he doesn't aspirate food into his lungs. I wasn't concerned that he was, but it's a precautionary thing they like to do before we are cleared for formal feeding therapy. He passed the swallow study, so now comes the fun part..feeding therapy! Haha, it's not really fun--it's quite frustrating actually, but I am glad we are able to start working on it. It's gonna be a long, slow, process I'm afraid. He'll lick things & take small tastes but anything with much substance will make him gag. It's a tricky thing, though...Clay's never learned to eat by mouth & with all the negative things forced upon him in his short life, I'm sure it's scary for him. I don't want to push too hard, but we have to try. Say a lil prayer for us & this process...we're sure gonna need 'em.

Clay has also learned to vocalize by plugging his trach with his finger. He doesn't particularly like to wear his PMV, so I'm just glad he's able to talk to us somehow. He loves naming people's things better than anything. For instance, he'll see my shoes by the door and he'll point to them & say 'mamma'. Or he'll see daddy's jacket hanging up & he'll point to it and say 'daddy'. I'm really trying to get him to name the actual thing instead of whose thing it is! Lol. He's such an observant little guy. He knows every car in the family and loves to talk about them, lol. A frequent conversation of ours goes like this: Clay looks out the window & says "Papa"...I say, "Papa's at work"...Clay does his sign for 'car'...and I'll say, "yep, Papa drove his car to work". Interchange Papa with Nana or Heee (Aunt C) or Hay-dee (Aunt Kd) or Eli or any other family member & that's Clay's favorite thing to talk about ;)

Last week, we had an appointment with the NICU graduate program where they tested him on all the social, cognitive, motor development and he did so great. I was so proud of him, I swear I coulda busted. Especially with the cognitive testing...when they were testing to see how his comprehension was, he went above his age & maxed out at the 3 year old level. Yes, I'm bragging. So hard. To think of allllllllll the stufffffff he's been through & his mind is still sharp as a tack. Amazing! Of course, he was behind in the gross motor skills but his fine motor skills were on point. He will catch up on his own time, I ain't a bit worried. 

He loves him some basketball...you can see the concentration in his tongue & check out that form ;)


The next big thing coming up is a Bronchoscope this Thursday, the 21st. It will be yet another sedation procedure, but we have to have it done to continue on with getting the trach out. And boy, are we are ready for that! Say a prayer for good results on Thursday, please!

Speaking of getting the trach out, our CDH buddy Mason got his trach out on Halloween! He has been doing great. Thank God!

We are so blessed. Really, truly blessed and I am so humbled & thankful for where we are now. Thank you all for continuing to keep up with our lil warrior's progress. Lots of love & peace to you all! Have a blessed Thanksgiving holiday! Xoxoxo!

Thursday, October 10, 2013

At full feeds but feeling puny :(

Well the good news is, we are up to full feeds of 56ml/hr and he's doing great with that so far! His g-tube is still racked, and will have to be for another week or so, then we can work on condensing feeds into boluses.

We were hoping to be home-free today, but Clay's coughing is worrying me. He coughs and hacks and coughs and hacks, turns blue and breaks out in a clammy-sweat...I suction and suction and give saline drops and do breathing treatments. Once he's over the coughing fit, he'll huff and puff and retract and just flat out looks like he's struggling. He's been on 26% oxygen since surgery--which hasn't been totally necessary until lately. We had to bump him up to 35% this morning and he's still hanging out in the low 90's. His heart rate has been elevated over the past couple of days, too. Something's just not right. But we had chest x-rays done yesterday and they looked fine. He hasn't had a fever, either. It's just so frustrating not knowing what is causing all this and so pitiful to see him so puny. If it is something viral, something that may be lingering from our rubber-ducky incident--the cough has been lingering since then, but it's obviously taking more of a toll on him now--if it is something like that, then I'm perfectly fine with taking him home and setting up our Clay-ICU again. I'd rather have him home, where he can rest and be more comfortable...I just don't want to take him home and have to come right back! So, we will be here for another day or two until we get something figured out.

Y'all say a prayer for my lil man. This never gets any easier :(

Saturday, October 5, 2013

Wake up, Clay belly!

Praying for poop...that's what we've been doing since surgery. He finally had a decent bowel movement tonight, nothing huge, but hey...it's a start! And it was without the help of a suppository so that's good he did it all on his own.

Poor little bug has been pretty uncomfortable, both with post-op pain and his bloated-ness. His belly has been distended and so tight, he looks like a lil pot belly piggy. A very cute pot belly piggy, of course ;)

Since his bowels haven't quite awoke from surgery, we haven't been able to start feedings :( He started getting some nutrients through is IV yesterday, but that's just not the same as tummy feeds... We've actually had to drain his g-tube constantly, so that all his gastric juices and air can escape, because otherwise he wretches and is extremely uncomfortable. We've tried to rack his g-tube a couple of times, which is when we attach a 60ml syringe (sans plunger) to his feeding tube extension and suspend it above him. With this, air can escape but gastric juices stay down. Both times we've tried this, he's not tolerated it so we put it back to drain. We don't want him wretching or gagging because we want his new Nissen wrap to stay intact. Surgery team isn't concerned with his sleepy belly right now...they say sometimes these things take a while. So, we wait.

He also had a touch of a fever tonight, 99.5..and he's sounding a bit wheezy in his lungs, and he's been retracting a bit when he breathes--which could be because of his overfilled belly. I'm really hoping things aren't settling down in his lungs; his cough has been a little weak because it really hurts him to cough. Poor fella, that's the last thing we need right now.

He has perked up a bit over the past couple of days... he's felt like sitting up in bed and is enjoying reading his books again..we took a lil wagon ride through the halls yesterday too. He's not back to his silly, smiley self yet, but we'll get there.

Handsome man.
Gettin lots of momma lovins...I think we're both tired of hospital living :/

Thank you all--for the millionth time--for your prayers & love & concerns for our baby. Lots of love & blessings to you all! Xoxoxoxo!

Wednesday, October 2, 2013

Recovery days.

Things have actually worked out better than expected this time around...very unusual for us! ha!

We had surgery yesterday morning; they took Clay to the OR around 11am and he was out and in the PICU around 3pm. Dr. Draus had great news for us in consultation afterwards. It turns out, his diaphragm is still intact--no hernias anywhere! Thank goodness! The reason his x-rays look like his stomach was misplaced is because the diaphragm is a bit loose on the left side. Dr. Draus decided not to tack it down or tighten it or anything because Clay has been doing so well breathing as it is, so why mess with it, right?

Dr. Draus was able to get a really good look at his handy-work and was really pleased with how well tissue has formed around the previous patching jobs. He said that he could see liver & spleen acting as a barrier between bowel & diaphragm, so it looked like bowel would have a hard time slipping up through the diaphragm even if it wanted to. Good news!

So, the diaphragm didn't need repairing after all...and we're hoping the loose-ness of it will allow for more room for Clay to grow & another repair won't be necessary for a long, long time!

The Nissen Fundoplication was done to prevent the frequent pukies that Clay was having. The Nissen wrap is a crazy concept that I have a hard time wrapping my head around, but a picture helps:

Illustration showing Nissen fundoplication
The stomach is wrapped around the esophagus and then sewn to itself to reinforce the esophageal sphincter, the muscle that keeps food & acids from backing back up into the esophagus. From what I understand, Clay will not be able to puke at all now...which I think is both a good and bad thing. Good, because maybe we can put some weight on his scrawny-tail...Bad, because even if he has a stomach bug, he won't be able to puke and sometimes puking just makes you feel better. But, puking numerous times a day everyday IS awful and since that's the situation we were in, I think the good overrides the bad.

Dr. Draus said he had to use a good portion of his stomach to wrap around the esophagus; so it will take a while for his stomach to be able to hold large amounts of food--he will have to be on a slow drip for a while. Hopefully we can start feeds in the morning.

Other than the Nissen, Clay also had a central line placed--a more permanent IV port for meds and fluids. Eric & I requested this so we could spare him from being poked so much. He is such a hard stick and poor guy had already been poked over 10 times during this little hospital stay...and it's fishing for veins almost everytime. That's just torture! We'll have that central line pulled before we leave for home, no big deal.

Clay also had his appendix removed while in surgery; Draus said it was there and in plain sight, so he just went ahead and took it out..lol. Now we won't have to worry about appendicitis, I guess!

Today has been a pretty rough day of recovery. Clay's been awfully sore, but is being such a trooper. He only fusses when he coughs. Poor guy, it's a bad time to have a cough. He has only smiled a few times today so that's a good indicator he's feeling rough. I can't imagine after being cut open and having your innards rearranged I'd feel like smiling either! Hoping tomorrow will be much better for him.

I cannot thank you all enough, for your well wishes and love and prayers. The power of prayer and positive thoughts is an amazing thing! We are so, SO blessed. Seriously, we have the best people in our lives. I cannot imagine going through this without all the love and support we've felt...from the visits, to the meals, from the calls & messages, to the likes and shares and comments on Facebook.. They all really do mean a lot to me. I hope I can pay it forward one day. You all are the best <3

Lots of love & peace to you all, dear friends... Xoxoxoxo!

Friday, September 27, 2013

Repair surgery hold-up...

Of course, things never go as planned with Mr. Clayton Cash and this trip to the hospital has been no different. Lil turkey likes to keep us on our toes! 

Repair surgery #3 was scheduled for Thursday morning, instead we found ourselves in the ER with a fever and a cough..

Let's rewind to Tuesday evening...Clay's in the bathtub, playing with his lil rubber ducky and he squeezes...squirtttttt, out comes the water and shoots directly into his trach...I swear, it could not happen again if we tried. He coughed and I suctioned, all was well and we went to bed. Through the night, he started coughing and continued more into Wednesday. His secretions were never thick or green or anything, so we weren't too concerned but still watching for more symptoms. Sure enough, through the night Wednesday he continued coughing and a fever spiked, respiratory rate and heart rate was high and his oxygen levels lingered in high 80s-low 90s. So we headed to the ER to see what was going on and surgery was postponed.

We're still not conclusive on the cause but I suspect that daggone ducky water irritated Clay's airway or something...Or maybe it's a regular old cold...We're waiting on blood cultures to be sure. Antibiotics were given too, just incase it is bacterial. 

His cough is dry and sounds croup-y...one of those painful kinds that is pitiful. But he's been wearing a humidified trach collar and that seems to be loosening things up and his cough is much better today. His lungs sound good and clear and he seems to be feeling much better since his fever is gone, too.

We've moved from the PICU to a regular room today and have been told they want to keep us here until surgery day, which sounds like may happen next Tuesday or Thursday. 

So, it's gonna be a long couple of weeks, but our spirits are high and we will just do what we gotta do!  Everything happens for a reason, that's what I believe! 

Oh, and look who got a big boy haircut:
How handsome, right? :)

I'll try to keep everyone posted on the latest. Lots of love and thankfulness to you all! Xoxoxo!

Monday, September 16, 2013

Reherniation, again...

What a day.

We had an appointment today with our surgeon, Dr. Draus, to discuss what could be causing Clay's ongoing puking issues. Chest x-rays were taken first thing and then we learned exactly the issue:


The patch that was constructed for his diaphragm in the previous two repair surgeries has given way right in the middle of his diaphragm, right below his sternum. The g-tube is serving as somewhat of an anchor for his stomach, so it's only partially up in his chest cavity, but we could very visibly see stomach in his chest while looking at the x-rays. That definitely explains his volume intolerance and his frequent pukies, poor lil bug. We weren't expecting that one.
On the way to Lexington, Eric & I mulled over different scenarios, pondering what triggers the pukes...could it be a food intolerance, could it be a motility issue, could it be that he needs a new reflux med...We discussed the possibilities of replacing the J-tube, going ahead with the Nissen surgery that we had previously cancelled, but we never even mentioned reherniation.

Although that is something that's always in the back of my mind, I figured another reherniation would mean another sick baby. I figured another reherniation would mean his breathing would be compromised. Thank God, that has not the case this time around. We don't even know how long it's been since it happened; his last x-ray was in May. But I haven't noticed any change in his breathing and he's still rockin' it 24/7 with no ventilator or oxygen, satting in low-to-mid 90's. Absolutely amazing, I'd say, considering his stomach has just unwantedly took-up house in his chest....just busted through the diaphragm, snuggled right up next to his heart & lungs. Not cool, stomach, not cool... How about you stay put next time?

We are in the books for repair surgery #3 for next Thursday, the 26th. Dr. Draus will be approaching this surgery through stomach and will use his original repair surgery site. He will have to pull the stomach back down where it's supposed to be and repatch the diaphragm. If it looks like the diaphragm tissue that is in place from the previous repair surgeries is strong enough to sew to, he will utilize that to place the new patch. But if the existing tissue is not sufficient, he will have to start from scratch. We are hoping for some good, strong tissue to sew to, that way another reherniation is less likely. Also, Dr. Draus will do the Nissen Fundoplication while he's in there. Might as well go ahead and knock it all out, I reckon.

Our expected hospital stay is 1 week. Oh, I dread it. I dread the surgery, I dread the recovery, I dread all of it! I don't want to see Clay have to go through this again. It sucks so bad.

Y'all keep us in your prayers. Clay will do wonderfully through this next hurdle, I have no doubt. He is my strong, strong, warrior and I am so proud of him.

And here's a few pics of him enjoying life, even with misplaced organs::

Looking at the sky...he loves to watch birds & airplanes!

Taking Pappy on a tractor ride.

These ankle braces are made for walking :)

lol, outfit courtesy of cousin Al :)

Holding hands with our friend Lyza..

Lots of things to talk about!

Gait trainer & ankle braces--just doing some PT!
What a big boy!
Yep, he's a trooper.

Thank you all, faithful followers of our journey. Your prayers and support lift us up when we need them the most. We love you so much! Xoxoxo!

Monday, August 19, 2013

On to the next one..


Wooohooo :)
I cannot believe how quickly and how smoothly this whole kicking-the-vent process has went. Clay was just tired of the ol' thing, I reckon--him & me both!

We have had appointments with Pulmonary, Nephrology, Cardiology, Speech & ENT over the past week & we've got good reports at them all.

At the pulmonologist, we got the okay to discontinue the vent at night--his settings were so low and he's done so well without the vent at all other times, we felt comfortable making that call. I put the pulse oximeter on him at night to monitor his oxygen levels and he's never made it alarm (it would alarm if his sats dropped below 85). He usually runs 92-96...No vent, no extra oxygen at all...CRAZYYYY!

We also started the conversation of the next step: TRACH DECANNULATION! Since he's off the vent now, there's no need for the trach, so let's get that thing outta there, right?! Doc referred us to the Ear, Nose & Throat clinic to begin the process.

We had the appointment with ENT today and the first step in getting the trach out is to make sure his airway is clear. Sometimes granulation tissue can grow around the trach site and can block the airway, so we're scheduled for a laryngoscopy & bronchoscopy on September 18th. It will be a sedation procedure, but an outpatient one, unless something funky happens...but hopefully things look good in there! I believe the doc said if all is clear the next steps would be to downsize the trach, then do capping trials & then we'll do a sleep study before we get it out completely. If things go smoothly, we could have the trach out in 2 or 3 months. Eeeeeeeeek! Lots of good vibes & prayers, please!

At our cardiology appointment, they also want to follow up with another ECHO to make sure his cardio status post-ventilator hasn't changed. So we're piggy-backin' that procedure with the others on September 18th. He had an EKG done today & Doc said things looked good. He was very pleased with everything, which is always reassuring to hear.

At the nephrology appointment, we discontinued a couple of his medications and we're supposed to have labwork drawn in a couple weeks to make sure it didn't rock the boat. I'm confident he'll be fine--I'm telling ya'll, he's making this easy on ol' Mom. All this no-ventilator, no-meds business..well, we have a couple meds, but still... It's awesome!

At our speech evaluation, we got a new Passy-Muir valve, which helps him to vocalize. That's the ONLY thing I miss about the ventilator--Clay would use the ventilator pressure to move air around his trach & he'd be able to talk that way, but now he can't do that unless he has this valve. And the valve works great--when he'll let us put it on him, the little rascal! He will not leave that valve on for nothin! As soon as I put it on, he starts coughing. It's a fake cough at first, but because the valve blocks air from being exhaled out of the trach, it really does get him choked up, so he'll cough and gag and carry on until someone pulls the valve off (it's usually him), but I don't like to force it on him--a lot of times, he'll work himself up til he's puking and that's no fun for anybody. When he's good and distracted, he'll leave it on and jabber up a storm--but I haven't been able to sneak it by him in a couple of days. I swear, I don't know what I'm gonna do with him! He pulls off the little trach nose piece too and will launch it across the room. I fight with him all day to try to keep that trach covered. I'm just waiting for the day he tries to stick something in it. If any of my trach-mommy friends happen to be reading this and have any suggestions, please pass them along...this is driving me nuts, lol!

Of course, Clay hammed it up during all these trips out & about...his new thing is to fist bump everyone he sees. It's the cutest thing ever! He'll hold his little fist up in the air, just waiting for a taker...once someone gives him a bump, he'll cheese so big...it's a little ridiculous. He is just so infectious, I love to watch him make people smile. He sure is a blessing.

What a stinker!

He is also doing better in physical therapy. We are now having to travel to the clinic a couple times a month for sessions, but I think he's a little more receptive to it in the new setting...a little. He's still pretty ornery. He doesn't like the fact that our PT makes him work, haha! Slowly but surely it's paying off--he is now pulling himself up to standing! He'll take a few steps from side to side while he's standing in front of something but he's awfully wobbley...his little hips are just so weak still. But he'll catch up in his own time...we are making progress! We also got a neat contraption last week called a Gait Trainer, it's a little walker essentially, but it's pretty cool! I think it's gonna be really beneficial for him. We're still waiting on the daggone ankle braces to come in...insurance must be holding up the process but hopefully they'll be in in a week or so.

Big boy, pulling himself up to standing all on his own! Look how proud he is :)

We're still having issues gaining weight. He's not lost anymore, he's just hanging steady at about 23 1/2 lbs. He has grown a couple of inches longer though. We upped his total daily volume last week, so hopefully that will help. If I could just get him to keep all of his feeds down during the day, we'd be doing good...poor lil guy has a super sensitive gag reflex. He'll cough and then, blaahhh, there goes his whole feeding. It's very frustrating. I really think that once we lose the trach the issue will get better but in the meantime, I'm trying to space his feedings out more during the day and not give him so much volume at once. Y'all say a prayer we can find a happy spot. We need to get some meat on his bones! 

I don't think dog food is the answer there, buddy..
Clay decides every once in a while that he likes to eat things by mouth, but it's hit or miss...stubborn thang! Once the trach comes out, we will be tackling the eating thing hardcore. One thing at a time, right?


Lots of love & peace to all of you! Thank God for wonderful blessings!


Wednesday, June 26, 2013

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

Saturday, June 8, 2013

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!

Sunday, April 28, 2013

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!