Many people have been asking the last couple days, "so, how'd it go with the geneticists on Friday?"
While I'd like to say, "it went splendidly and we came away with a definite diagnosis for Corban," I can't. We still don't know what his underlying condition/syndrome is. But we did draw FIVE top geneticists from all around the country together in one room to wonder over our little boy.
The line-up begins with Dr. Judith Hall, a geneticist/pediatrician who has studied arthrogryposis for over 40 years and is famous for her work on the book, Arthrogryposis: A Text Atlas. Next we have Dr. Michael Bamshad, from Seattle Children's Hospital. He is currently one of the top guys, if not the top, researching birth defects and causes/syndromes behind arthrogryposis. Then you have Dr. Ken Jones, of San Diego, California. He is considered to be the father of fetal alcohol syndrome, as its discoverer. Then there's Dr. Art Aylsworth of Chapel Hill, NC. He is also known for his work regarding birth defects, with over 40 years experience under his belt. And lastly, Dr. Roger Stevenson, who graciously made this meeting possible for us.
And if you're thinking, "Wow! All these important people gathered from all over the country JUST to meet Corban." Well.. they didn't. They were attending an annual genetics conference just a couple hours away from us. But it's rather uncanny how the conference (which is held in various locations all over the US and Canada) just happened to be in our area this year. And that Corban just happened to have his yearly check-up only one week prior to the conference. And that his geneticist just happened to have the sway to get all these important people together at the last minute. And that they just happened to have a break in the conference Friday afternoon to allow them to meet with us for an hour.
All that just happened? Hmm. I'd say that was the Lord, once again making a way for us.
So, what was the consensus of the meeting, you ask? I wish I knew! With 5 geneticists, there were about 5 different opinions. Dr. Stevenson and Dr. Bamshad want to test Corban for Freeman-Sheldon syndrome (or Sheldon-Hall syndrome). Dr. Hall thinks Corban has a connective tissue disorder (possibly Beals Syndrome). Dr. Stevenson suggested that maybe he has TWO syndromes, and Dr. Jones thinks he has something completely NEW!
AHHHH!!
So to say there was any kind of consensus... ? Uh, not really. But, we do have a few options, starting with getting samples of our DNA and sending it off to Dr. Bamshad in Seattle. If he can't find anything, then we'll most likely get a muscle biopsy during Corban's next surgery. And if that's inconclusive, then we'll just keep knocking on doors. And praying. Because that's really all we can do anyway.
1
1
1
4
0
After 5 long months in the NICU, wondering what was to become of our baby. After 3 1/2 months of traveling back and forth to Philadelphia. After 6 sets of casts. After surgery. After sorrows.
JOY!
Joy, is just what I've been praying for these last 10 months, and joy is what I have today. I've been looking at these pictures over and over and over again, and no matter how many times I look at them, I smile. To see just how far we've come, truly makes me stand in awe.
I stand in awe of God, who, by his rich mercy has brought us this far. I stand in awe of Corban's doctor, who has made a masterpiece out of twisted, crooked feet. And I stand in awe of Corban, who has fought harder than any baby should have to fight, yet has turned out to be one of life's greatest gifts.
I suppose, if I could have seen 10 months ago how this story would turn out, I wouldn't have been such a stressed out, frazzled, emotional wreck. Maybe I'd have made a few less enemies too! But I wasn't afforded such a luxury. I couldn't see down that telescope of time to know that we'd be at this point. I honestly didn't know if Corban was going to survive.
If only, I had x-ray vision. Right? Trusting God would have been so much easier. SO much easier. But then I wonder, what if this story hadn't ended so well? What if Corban didn't make it? I would have lost hope. I might have given up. I may have even closed my heart to this amazing little boy. And I would have missed out on this very precious life.
So, I'm glad I don't have x-ray vision. I'm glad I couldn't see down that telescope of time. And even now, I am tempted to want a sneak peek to see if Corban will walk, use his fingers, be fully independent, etc. But I'll resist. Only God knows the future. Only God orders our steps. So, I'll leave the future for God, and be sure to thank him for the present. It truly is a gift.
2
0
The Road Ahead of Us
Well....
Corban and I just returned last night from our 7th trip up to Philadelphia. We had a routine check-up, traveling was rather smooth, so overall it was a decent trip.
It was a sobering journey though, as I was reminded "this ain't over yet." Corban has come SO far over the past year, and I was busy reveling in his birthday and all the progress he's made, that I kind of forgot how far we still have to go.
While his feet are looking amazing, it doesn't mean they won't ever need further correction. There's a chance he might have to have pins put in his feet again, later on down the road.
His hips are a MESS. His hips are still dislocated and the ball joints are backwards (from when his femurs broke at birth. They healed in the opposite direction). His hips should be corrected within the next 6 months or so and his doctor informed me on Monday that he will need to cut and remove a section of Corban's femurs so he can fit the hips into socket. So, his femurs will always be short. :(
Corban also has a little bit of scoliosis in his upper spine. Not super serious now, but something we'll need to keep an eye on as he grows.
And his knees. Oh! His knees...
They are bothersome. His right knee is subluxed, so the bones don't line up like they should. His left knee is also subluxed, but with an additional rotational craziness going on. So, they are both a mess, and will need correcting down the road. Doctor says probably when he's around 4 years old, he will need external fixators. Which in my book, stinks!
Have you seen these things? Can you imagine having this done to your leg? Ugh! Not what I want to see for my baby! I hate it.
I was so ready to move on. To get his hips corrected and move on. But it doesn't look like this road is ending anytime soon. We are not in for months of surgeries, but years. Years and years. And years.
Sigh.
Corban and I just returned last night from our 7th trip up to Philadelphia. We had a routine check-up, traveling was rather smooth, so overall it was a decent trip.
It was a sobering journey though, as I was reminded "this ain't over yet." Corban has come SO far over the past year, and I was busy reveling in his birthday and all the progress he's made, that I kind of forgot how far we still have to go.
While his feet are looking amazing, it doesn't mean they won't ever need further correction. There's a chance he might have to have pins put in his feet again, later on down the road.
His hips are a MESS. His hips are still dislocated and the ball joints are backwards (from when his femurs broke at birth. They healed in the opposite direction). His hips should be corrected within the next 6 months or so and his doctor informed me on Monday that he will need to cut and remove a section of Corban's femurs so he can fit the hips into socket. So, his femurs will always be short. :(
Corban also has a little bit of scoliosis in his upper spine. Not super serious now, but something we'll need to keep an eye on as he grows.
And his knees. Oh! His knees...
They are bothersome. His right knee is subluxed, so the bones don't line up like they should. His left knee is also subluxed, but with an additional rotational craziness going on. So, they are both a mess, and will need correcting down the road. Doctor says probably when he's around 4 years old, he will need external fixators. Which in my book, stinks!
Have you seen these things? Can you imagine having this done to your leg? Ugh! Not what I want to see for my baby! I hate it.
I was so ready to move on. To get his hips corrected and move on. But it doesn't look like this road is ending anytime soon. We are not in for months of surgeries, but years. Years and years. And years.
Sigh.
Happy Birthday, Corban!!!!!!!
Now that Corban's first birthday has finally arrived, I've been scratching my head as to how I could even begin to tell you what this past year has been like. And I've decided... I can't tell you.
But I can show you.
Here goes...
Corban - Our Gift Dedicated to God from Corbani on Vimeo.
PS. For those of you who are a bit less technically savvy... If you'd like to watch this video full screen, click on the icon directly to the left of the word "vimeo."
But I can show you.
Here goes...
Corban - Our Gift Dedicated to God from Corbani on Vimeo.
PS. For those of you who are a bit less technically savvy... If you'd like to watch this video full screen, click on the icon directly to the left of the word "vimeo."
So, What's with All the Gear?
It's always entertaining when Corban and I go out (usually to one of his many doctor appointments), to hear how people choose to ask about him. Some do it better than others. Sometimes it's easy to answer them graciously, and other times... uhhh, a little more challenging.
Like Monday, someone chose to strike up a conversation with me by asking, "so, what's wrong with your baby?"
Hmmm. What did I want to say? How about, "What planet did you just get kicked off? I mean, really. How about asking what's right with my baby?!? Then I'd tell you, 'SO MUCH!' He's been through more in his short baby life than most of us ever have or will, and he's come out ALIVE to tell about it. With a smile on his face, nonetheless! And if you're insinuating that I did something to cause his condition, no, I didn't. This is how God gave him to me. He could have been born to anyone - including you. But you know, I'm awfully glad he wasn't! Because if he were, he would be stuck with an insensitive mother who strikes up conversations with complete strangers with, 'what's wrong with your baby?'"
But, I didn't say that. What I actually said was, "He has a condition called 'arthrogryposis' that affects his joints and muscles." I figured that would probably be the more godly response, and all she really wanted to hear anyway.
So, that was Monday's adventure. On Tuesday, I met someone else who came up with a more creative way of asking about Corban. AFTER she said hello and talked to me for a bit, she asked, "so.... what's with all the gear?"
Haha. "What's with all the gear." You know, honestly, I would probably wonder that too. And there's a good chance many of you might as well. So, I thought I'd take a quick minute to explain what all the "gear" is really for.
Cranial Molding Helmet. It's nothing serious. It's nothing dangerous. Corban just has a flat head. He spent the first 5 months of his life in the NICU where he could barely move or be moved (4 broken bones + chest tubes + ventilator + feeding tube). So he spent a good bit of time on his back. While he's doing much better now, he still is very limited in his mobility. Thus, his head is a little flat.
The doctor says, he'll need to wear it about 4 months. Which, really, is nothing compared to a lifetime of having a beautifully shaped head. I'll take the 4 months of sweaty, stinky head, any day! Just praying it actually works!!
Hand splints. Pretty simple. We gotta get those fingers opened so he can use his hands! Hopefully with lots of splinting we'll be able to get his fists opened and avoid further treatment. Although, his upper extremities doc says he might end up needing surgery on his thumbs down the road. I'm hoping he's wrong.
AFOs (ankle foot orthotics). Just some really awesome shoes. He'll be wearing these guys for a few years (as he grows) to keep his feet in the right place. After 6 sets of casts, foot surgery, and 5 trips up to Philadelphia, he'll be sporting these babies FOREVER! ;)
So, I hope that little explanation helps, and puts you at ease when you see all the weird things my baby is wearing these days. He's ok. Really, you won't break him by looking at him! He just needs a little extra equipment to help him along in life.
And can I just take a moment to say, I think my baby is beautiful? He puts a smile on my face every time he sucks on that bottom lip of his. When he smiles with his eyes. When he kicks his legs with excitement over something he's accomplished. There's nothing "wrong" with him. He's perfect! And without all the "gear," it's easier to see how handsome he really is.
So, without further adieu, I present to you, Corban Levi. Gear-less...
Like Monday, someone chose to strike up a conversation with me by asking, "so, what's wrong with your baby?"
Hmmm. What did I want to say? How about, "What planet did you just get kicked off? I mean, really. How about asking what's right with my baby?!? Then I'd tell you, 'SO MUCH!' He's been through more in his short baby life than most of us ever have or will, and he's come out ALIVE to tell about it. With a smile on his face, nonetheless! And if you're insinuating that I did something to cause his condition, no, I didn't. This is how God gave him to me. He could have been born to anyone - including you. But you know, I'm awfully glad he wasn't! Because if he were, he would be stuck with an insensitive mother who strikes up conversations with complete strangers with, 'what's wrong with your baby?'"
But, I didn't say that. What I actually said was, "He has a condition called 'arthrogryposis' that affects his joints and muscles." I figured that would probably be the more godly response, and all she really wanted to hear anyway.
So, that was Monday's adventure. On Tuesday, I met someone else who came up with a more creative way of asking about Corban. AFTER she said hello and talked to me for a bit, she asked, "so.... what's with all the gear?"
Haha. "What's with all the gear." You know, honestly, I would probably wonder that too. And there's a good chance many of you might as well. So, I thought I'd take a quick minute to explain what all the "gear" is really for.
Cranial Molding Helmet. It's nothing serious. It's nothing dangerous. Corban just has a flat head. He spent the first 5 months of his life in the NICU where he could barely move or be moved (4 broken bones + chest tubes + ventilator + feeding tube). So he spent a good bit of time on his back. While he's doing much better now, he still is very limited in his mobility. Thus, his head is a little flat.
The doctor says, he'll need to wear it about 4 months. Which, really, is nothing compared to a lifetime of having a beautifully shaped head. I'll take the 4 months of sweaty, stinky head, any day! Just praying it actually works!!
So, I hope that little explanation helps, and puts you at ease when you see all the weird things my baby is wearing these days. He's ok. Really, you won't break him by looking at him! He just needs a little extra equipment to help him along in life.
And can I just take a moment to say, I think my baby is beautiful? He puts a smile on my face every time he sucks on that bottom lip of his. When he smiles with his eyes. When he kicks his legs with excitement over something he's accomplished. There's nothing "wrong" with him. He's perfect! And without all the "gear," it's easier to see how handsome he really is.
So, without further adieu, I present to you, Corban Levi. Gear-less...
X-Ray Vision
JOY!
Joy, is just what I've been praying for these last 10 months, and joy is what I have today. I've been looking at these pictures over and over and over again, and no matter how many times I look at them, I smile. To see just how far we've come, truly makes me stand in awe.
I stand in awe of God, who, by his rich mercy has brought us this far. I stand in awe of Corban's doctor, who has made a masterpiece out of twisted, crooked feet. And I stand in awe of Corban, who has fought harder than any baby should have to fight, yet has turned out to be one of life's greatest gifts.
I suppose, if I could have seen 10 months ago how this story would turn out, I wouldn't have been such a stressed out, frazzled, emotional wreck. Maybe I'd have made a few less enemies too! But I wasn't afforded such a luxury. I couldn't see down that telescope of time to know that we'd be at this point. I honestly didn't know if Corban was going to survive.
If only, I had x-ray vision. Right? Trusting God would have been so much easier. SO much easier. But then I wonder, what if this story hadn't ended so well? What if Corban didn't make it? I would have lost hope. I might have given up. I may have even closed my heart to this amazing little boy. And I would have missed out on this very precious life.
So, I'm glad I don't have x-ray vision. I'm glad I couldn't see down that telescope of time. And even now, I am tempted to want a sneak peek to see if Corban will walk, use his fingers, be fully independent, etc. But I'll resist. Only God knows the future. Only God orders our steps. So, I'll leave the future for God, and be sure to thank him for the present. It truly is a gift.
Strummin' His Guitar
I thought this was too cute not to share! Corban, strummin' his toy guitar. How awesome is that? Hee hee. I think it's a sign. A talented musician in the making right here, folks.
Got a couple great smiles on camera too....
Don't you just wanna eat him up??
Got a couple great smiles on camera too....
A Good Night's Sleep
If any of you wonder why I look haggard and sleep deprived these days, it might be because I've had a night like last night. What do I mean? Well, let me explain.
It began yesterday afternoon. Corban didn't want to take his nap, but cried off and on instead. The crying went on into the evening, and as any of you who've had newborns know, it really can be a guessing game to figure out what's wrong with them. After a dozen attempts to "make it all better" and hope I stumbled upon something that worked, I began to realize he must be having tummy trouble (most likely gas).
So, after hearing him cry most of the afternoon and into the evening, I finally got him to settle down around 8/8:30. He slept, but only for a half an hour or so, then he was up crying again. In the meantime, his older brother and sister are both clamoring for my attention, crying, whining, fighting, ready to go to bed.
He calms down after a little while, and we get the other kids in bed. But Corban is wide awake, and remains wired until....
11:30pm - Put Corban to bed, hoping and praying he sleeps through the night. I'm plum worn out from a LONG day!!
12:00am - Corban cries. Run upstairs and attempt burping him, repositioning him and giving him his pacifier. Have venting tube in his G-tube to try to release gas and make him more comfortable.
12:15/12:30am - Corban finally goes to sleep.
1:00am - Get ready for bed. Get Corban's milk ready to go over the pump, 9 oz. in 6 hours.
1:30/2:00am - Finally fall asleep.
3:30am - Corban cries. Notice the G-tube pump stopped with a feed error. Hit "continue" and try to figure out what's wrong with Corban. Turn him to his side and give him his pacifier. That seems to settle him for the time being.
5:30am - Pump stopped again. Inspect the tubing to make sure clamp is not closed and hit "continue." Again. Turn the alarm on so I hear it, if there's a problem.
5:45am - Alarm sounds. Discover the milk hasn't been delivering and the bag is still full from when I filled it up at 1am. Take tubing out of the pump and re-feed it. Turn up the delivery rate and pray he doesn't get a tummy ache from it being too fast.
6:30am - Corban cries. Stick pacifier in his mouth and hope that resolves the problem, not really jumping for joy over another middle of the night brain storming session.
7:15am - He cries again. Pacifier again.
8:15am - Pacifier.
10:25am - Corban wakes up happy. Mommy, on the other hand........
Sigh.
So, if you're tempted to be jealous of me when I take an afternoon nap, don't be. There's a good reason why you might not be able to reach me at 2:00 in the afternoon. It is not because I'm soaking in excessive amounts of zzzz's. I'm catching up.
It began yesterday afternoon. Corban didn't want to take his nap, but cried off and on instead. The crying went on into the evening, and as any of you who've had newborns know, it really can be a guessing game to figure out what's wrong with them. After a dozen attempts to "make it all better" and hope I stumbled upon something that worked, I began to realize he must be having tummy trouble (most likely gas).
So, after hearing him cry most of the afternoon and into the evening, I finally got him to settle down around 8/8:30. He slept, but only for a half an hour or so, then he was up crying again. In the meantime, his older brother and sister are both clamoring for my attention, crying, whining, fighting, ready to go to bed.
He calms down after a little while, and we get the other kids in bed. But Corban is wide awake, and remains wired until....
11:30pm - Put Corban to bed, hoping and praying he sleeps through the night. I'm plum worn out from a LONG day!!
12:00am - Corban cries. Run upstairs and attempt burping him, repositioning him and giving him his pacifier. Have venting tube in his G-tube to try to release gas and make him more comfortable.
12:15/12:30am - Corban finally goes to sleep.
1:00am - Get ready for bed. Get Corban's milk ready to go over the pump, 9 oz. in 6 hours.
1:30/2:00am - Finally fall asleep.
3:30am - Corban cries. Notice the G-tube pump stopped with a feed error. Hit "continue" and try to figure out what's wrong with Corban. Turn him to his side and give him his pacifier. That seems to settle him for the time being.
5:30am - Pump stopped again. Inspect the tubing to make sure clamp is not closed and hit "continue." Again. Turn the alarm on so I hear it, if there's a problem.
5:45am - Alarm sounds. Discover the milk hasn't been delivering and the bag is still full from when I filled it up at 1am. Take tubing out of the pump and re-feed it. Turn up the delivery rate and pray he doesn't get a tummy ache from it being too fast.
6:30am - Corban cries. Stick pacifier in his mouth and hope that resolves the problem, not really jumping for joy over another middle of the night brain storming session.
7:15am - He cries again. Pacifier again.
8:15am - Pacifier.
10:25am - Corban wakes up happy. Mommy, on the other hand........
Sigh.
So, if you're tempted to be jealous of me when I take an afternoon nap, don't be. There's a good reason why you might not be able to reach me at 2:00 in the afternoon. It is not because I'm soaking in excessive amounts of zzzz's. I'm catching up.
Subscribe to:
Posts (Atom)
