Here's the haps:
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| We've found our inner artist.. |
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| We've trotted around on Trigger.. |
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| And explored in our playground fort.. |
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| We've taken Pappy on a dirtbike ride.. |
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| We've petted puppy dog noses.. |
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| And learned that legs are made for standing..(!!!!!!!!!!!!) |
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| We've watched soccer games (on a chilly day)... |
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!
