This guy...
...is finally asleep.I'm not sure how much longer Ethan can be on steroids and I can, simultaneously, keep my sanity intact. If that picture doesn't say it all, take a look at the video-graphic proof I've captured over the past few days.
Ethan LOVES Chocolate Pudding! from Joye Mullis on Vimeo.
Untitled from Joye Mullis on Vimeo.
The child is eating like I've never seen him eat before! It's true that he loves the chocolate pudding, but he consistently eats 1/4 cup of yogurt at 2 out of 3 meals each day (along with the pudding). Tonight, at dinner, he ate some feta cheese. Like, lots of it. Then he tried some BBQ potato chips and gulped down some water from a standard open-mouth cup. This sure is a funny way of God answering my prayers, don't ya think? I just hope this new-found love and interest for food doesn't stop when the steroids do!
His behavior is leaving much to be desired, however. One minute he's wide open, tackling a throw pillow at every turn. The next, he's throwing a fit about the smallest thing. Thankfully, he's been sleeping well at night, but naps are hit or miss. Come 7:00 in the evening, he's so tired he can barely hold his eyes open, but continues to fight it. Tonight is a good night. He's in his crib and asleep before 8:15. Can I get an amen?!
Anyway.
The whole point of this post is to ask y'all to say some prayers for us. We've got a loooooong day tomorrow, full of appointments. When I say long, I mean leaving here at 8:30 tomorrow morning and not getting home until 5:00 or so. That's like a workday. Shouldn't we be getting paid for this??
Our day starts with the pediatrician for a follow-up visit from Thursday. I am really, Really, REALLY hoping that we get the go-ahead to stop the breathing treatments and prednisone. I feel like Ethan is sounding better, but we'll see what the professional has to say. Pray that the doctor will notice healing in progress, and will give an order to discontinue these medicines!
After that, we'll go visit our beloved cardiologist. We haven't seen Dr. I (in the office) in 3 months, which is the longest time between appointments yet! I always have a lot of built-up anxiety about Ethan's cardiology appointments. I just never can tell what's going on in that unique heart of his, and I brace myself for the worst. Every time someone (pediatrician, resident, med student, etc.) listens to Ethan's heart and comments, "Well, that sure is one funny sounding murmur!" I tense up a little. Sure, I know that to be true, and it probably always will be. But... does it sound even more funny? Is something going on in there that I can't see from out here? It could make me (even more) crazy if I let it. We'll just have to wait and see what the echo and other tests show. Y'all know the prayer for this one ... restoration and healing of Ethan's heart, and peace for Mama and Daddy.
Lastly, we'll head to Duke to see Ethan's original orthopedic surgeon. He'll assess the situation with Ethan's finger and we'll make a plan for what our next steps will be. Tomorrow's appointment may also involve having another brace made that will double as protection for his finger and maintaining correction of the original surgery. I will say, as horrible as this sounds, that I pinched Ethan's amputated finger yesterday in 2 different places and he cried both times! This means feeling is returning, y'all! Those nerve endings are finding their way and Ethan is on his way to making a full recovery. NOW, can I get an amen?!
We will need lots and lots of patience to make it through that last appointment. I can imagine that Ethan won't nap very much at all tomorrow, which probably means that Jeramie and I will get a little testy with each other come 3:30 or so. That last hour and a half has the potential to be ugly. Pray it ain't so.
As long as I'm still standing tomorrow evening, I'll update y'all on how everything went. For now, I'm going to go savor the quiet and get all the rest I can ... good night!
His behavior is leaving much to be desired, however. One minute he's wide open, tackling a throw pillow at every turn. The next, he's throwing a fit about the smallest thing. Thankfully, he's been sleeping well at night, but naps are hit or miss. Come 7:00 in the evening, he's so tired he can barely hold his eyes open, but continues to fight it. Tonight is a good night. He's in his crib and asleep before 8:15. Can I get an amen?!
Anyway.
The whole point of this post is to ask y'all to say some prayers for us. We've got a loooooong day tomorrow, full of appointments. When I say long, I mean leaving here at 8:30 tomorrow morning and not getting home until 5:00 or so. That's like a workday. Shouldn't we be getting paid for this??
Our day starts with the pediatrician for a follow-up visit from Thursday. I am really, Really, REALLY hoping that we get the go-ahead to stop the breathing treatments and prednisone. I feel like Ethan is sounding better, but we'll see what the professional has to say. Pray that the doctor will notice healing in progress, and will give an order to discontinue these medicines!
After that, we'll go visit our beloved cardiologist. We haven't seen Dr. I (in the office) in 3 months, which is the longest time between appointments yet! I always have a lot of built-up anxiety about Ethan's cardiology appointments. I just never can tell what's going on in that unique heart of his, and I brace myself for the worst. Every time someone (pediatrician, resident, med student, etc.) listens to Ethan's heart and comments, "Well, that sure is one funny sounding murmur!" I tense up a little. Sure, I know that to be true, and it probably always will be. But... does it sound even more funny? Is something going on in there that I can't see from out here? It could make me (even more) crazy if I let it. We'll just have to wait and see what the echo and other tests show. Y'all know the prayer for this one ... restoration and healing of Ethan's heart, and peace for Mama and Daddy.
Lastly, we'll head to Duke to see Ethan's original orthopedic surgeon. He'll assess the situation with Ethan's finger and we'll make a plan for what our next steps will be. Tomorrow's appointment may also involve having another brace made that will double as protection for his finger and maintaining correction of the original surgery. I will say, as horrible as this sounds, that I pinched Ethan's amputated finger yesterday in 2 different places and he cried both times! This means feeling is returning, y'all! Those nerve endings are finding their way and Ethan is on his way to making a full recovery. NOW, can I get an amen?!
We will need lots and lots of patience to make it through that last appointment. I can imagine that Ethan won't nap very much at all tomorrow, which probably means that Jeramie and I will get a little testy with each other come 3:30 or so. That last hour and a half has the potential to be ugly. Pray it ain't so.
As long as I'm still standing tomorrow evening, I'll update y'all on how everything went. For now, I'm going to go savor the quiet and get all the rest I can ... good night!
1 comment:
OMG!!!!! I almost screamed with excitement when I read that Ethan hollered when you pinched his finger! YAY!!!! It doesn't sound right that I got excited over you pinching him does it? LOL!!! I am just so stinking happy to hear that he has feeling back. Phew!!
I did laugh a lot reading your blog update regarding the roid rage and the crazy jump in eating. Logan has done that to me before while on steroids. I too hope that his eating will continue to pick up after the steroids are discontinued. We can hope can't we?
Also, I know what you mean about the cardiology appts. I too get extra anxious when that day finally arrives. I think we do almost expect the worst out of those appointments which is completely normal given our track record. I am praying that each appointment goes well for you guys and you get plenty of GOOD news!
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