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Started By
Message
re: 1-mth-old son referred to neurosurgeon for craniosynostosis (helmet pic p. 14)
Posted on 7/24/14 at 10:51 pm to GeeOH
Posted on 7/24/14 at 10:51 pm to GeeOH
quote:
I've seen the difference first hand and it is not even close!
Please share which neurosurgeons you have seen do mainly cosmetic surgeries and which ones had obviously better results than the others.
0
Posted on 7/24/14 at 11:14 pm to ILikeLSUToo
Aww so precious. Hoping he calms and gets back to his sweet little self. He will probably sleep better now that he's had some formula. Bless his heart.
Posted on 7/24/14 at 11:19 pm to ILikeLSUToo
quote:
this machine goes BEEEP BEEEP MOTHERfrickER every time he breathes different.
Children's is probably the loudest hospital on earth with regards to alarms going off constantly. I'll try to check this thread tomorrow and follow you guys.
Also, I am off tomorrow, so if there's anything you need, hopefuldoctd at that Google domain that can receive emails should get hold of me.
Posted on 7/25/14 at 12:07 am to ILikeLSUToo
Your little champ is looking good!!!
Keeping y'all in my prayers.
I know it's easy for me to say as it's not my boy lying there, but try not to let the crying/whimpering get you too worked up:
1. It's normal. ETA: Crying is a good sign. Surgery hurts, so a quiet listless baby is worrisome.
2. It's the only form of communication he has
3. In another 24 hours, he'll be much better
4. He'll never remember it.
That being said, let it all out here so that you can be strong and positive for your wife.
Keeping y'all in my prayers.
I know it's easy for me to say as it's not my boy lying there, but try not to let the crying/whimpering get you too worked up:
1. It's normal. ETA: Crying is a good sign. Surgery hurts, so a quiet listless baby is worrisome.
2. It's the only form of communication he has
3. In another 24 hours, he'll be much better
4. He'll never remember it.
That being said, let it all out here so that you can be strong and positive for your wife.
This post was edited on 7/25/14 at 12:10 am
Posted on 7/25/14 at 12:23 am to ILikeLSUToo
Prayers sent
Posted on 7/25/14 at 2:09 pm to Monk
Got home from the hospital a little over an hour ago. So glad we didn't have to say an extra night. I got maybe an hour and a half of sleep last night, and my wife didn't get much more than me.
Today has been much better for Zachary. Got some smiles out of him early this morning. He's been fairly content just being held, he finally realized how hungry he is, and he's probably happier without all the wires and shite, but now that all the strong drugs have worn off and we're down to just Tylenol "as needed," we can definitely see he's in pain.
Thank you all for the support, prayers, encouragement, and advice.
Next step will be the helmet therapy. We're going back to get him measured and fitted for that in a week or so, and a few days after that, it'll be part of him for the next 12-15 months. It's weird to think that he essentially won't even know life without a helmet, and right at about the time he's walking, talking, and starting to make memories, the helmet comes off.
Today has been much better for Zachary. Got some smiles out of him early this morning. He's been fairly content just being held, he finally realized how hungry he is, and he's probably happier without all the wires and shite, but now that all the strong drugs have worn off and we're down to just Tylenol "as needed," we can definitely see he's in pain.
Thank you all for the support, prayers, encouragement, and advice.
Next step will be the helmet therapy. We're going back to get him measured and fitted for that in a week or so, and a few days after that, it'll be part of him for the next 12-15 months. It's weird to think that he essentially won't even know life without a helmet, and right at about the time he's walking, talking, and starting to make memories, the helmet comes off.
Posted on 7/25/14 at 2:20 pm to ILikeLSUToo
And one day he might have braces. Or need glasses. The helmet won't affect him as much as you think.
Glad he's pulled through okay and is on the road to healing. My wife and I have an 8-month-old. And we've been following your updates. Keep them coming.
Glad he's pulled through okay and is on the road to healing. My wife and I have an 8-month-old. And we've been following your updates. Keep them coming.
Posted on 7/25/14 at 2:30 pm to ILikeLSUToo
Been following your posts. So glad the worst is over. Your son is precious!
Friend of mine has relative with a boy who has to wear a helmet. He's got an LSU helmet. Looks so cute. Anyway, you and he will be used to it in short order. Just becomes a way of life. My niece had to wear leg braces for a very long time just after she started walking. It was odd at first and she looked pitiful, initially. After a week or so everyone was so used to her being in them, it was nothing. It was like we didn't know any different. It was much more odd when she got to stop wearing them. They didn't stop her from anything either. She thought they were normal.
Friend of mine has relative with a boy who has to wear a helmet. He's got an LSU helmet. Looks so cute. Anyway, you and he will be used to it in short order. Just becomes a way of life. My niece had to wear leg braces for a very long time just after she started walking. It was odd at first and she looked pitiful, initially. After a week or so everyone was so used to her being in them, it was nothing. It was like we didn't know any different. It was much more odd when she got to stop wearing them. They didn't stop her from anything either. She thought they were normal.
Posted on 7/25/14 at 2:35 pm to ILikeLSUToo
Glad everything went well!
Posted on 7/28/14 at 4:51 pm to brucevilanch
Anymore news? And we better get pics of him and his helmet. If you can get ones in colors, you know which colors to pick.
Posted on 7/28/14 at 5:12 pm to ILikeLSUToo
BUMP DAMMIT
Posted on 7/30/14 at 9:09 pm to FT
Sorry, totally missed these bumps from a couple days ago. Wife noticed them a few minutes ago.
Tomorrow will mark one week since the surgery. For the first few days, he was obviously in pain -- he'd scream if we handled/moved him from one spot to another, but once we stopped moving him, he was fine. He got noticeably better each day.
Here's a lovely shot of the incision, taken a few days ago:
As of today, he's pretty close to back to normal as far as pain goes. Swelling looks to be completely gone.
The surgeon said his ears will probably be asymmetrical for the next several years as his head continues to reform to a normal shape even after the helmet is off.
Our first appointment for the follow-up and helmet fitting is this Tuesday (on my daughter's birthday, which sucks, but at least we are having her party Saturday). The helmet will actually be put on him at the next appointment, August 18. Then the 28th is another follow-up to check the helmet. From what I've seen in the waiting room at the craniofacial clinic and pictures online, the only helmet color choice is white/clear. But there's always the option to add our own decor.
Tomorrow will mark one week since the surgery. For the first few days, he was obviously in pain -- he'd scream if we handled/moved him from one spot to another, but once we stopped moving him, he was fine. He got noticeably better each day.
Here's a lovely shot of the incision, taken a few days ago:
As of today, he's pretty close to back to normal as far as pain goes. Swelling looks to be completely gone.
The surgeon said his ears will probably be asymmetrical for the next several years as his head continues to reform to a normal shape even after the helmet is off.
Our first appointment for the follow-up and helmet fitting is this Tuesday (on my daughter's birthday, which sucks, but at least we are having her party Saturday). The helmet will actually be put on him at the next appointment, August 18. Then the 28th is another follow-up to check the helmet. From what I've seen in the waiting room at the craniofacial clinic and pictures online, the only helmet color choice is white/clear. But there's always the option to add our own decor.
Posted on 7/30/14 at 9:14 pm to ILikeLSUToo
Glad to hear a positive update. Cute kid for sure.....and obviously a fighter!
Posted on 7/30/14 at 9:17 pm to ILikeLSUToo
Dude as stupid as this may sound, I wish my lil guy had a reason to wear a helmet constantly.
I have 3/4 of my hardwood floor rental home padded with either a rug or the kids soft puzzle blocks that connect to form a surface.
Of course the dude is sitting on the edge of one of the mags and falls back an hits his head off the damn floor.
He falls maybe one time every couple days like that and always manages to do it on the hard surface. I feel so awful an worry he's gonna do some damage
I have 3/4 of my hardwood floor rental home padded with either a rug or the kids soft puzzle blocks that connect to form a surface.
Of course the dude is sitting on the edge of one of the mags and falls back an hits his head off the damn floor.
He falls maybe one time every couple days like that and always manages to do it on the hard surface. I feel so awful an worry he's gonna do some damage
Posted on 7/30/14 at 9:24 pm to ILikeLSUToo
What a great picture! Makes all of the other bs seem so trivial. He is so handsome. I admire you and your wife's strength, and that smile says it all!!!
Posted on 7/30/14 at 9:27 pm to ILikeLSUToo
Where is he getting his helmet made at?
Posted on 7/30/14 at 9:40 pm to hugo
Hanger Orthotics. Apparently the Hanger clinic is at Children's Hospital in New Orleans.
Posted on 8/18/14 at 7:37 pm to ILikeLSUToo
Today was helmet day.
We are supposed to start with acclimation -- an hour off and an hour on during the day, until he's wearing it 24-7 by a week or week and a half. He seems to hate the process of taking it on and off more than just having it on, so acclimation should be easy enough.
$4,000 hunk of plastic on his head (luckily we will only have to pay about $250 for it -- which is good since he's likely going to need 3-4 of them over the next 12 months as he grows)
We are supposed to start with acclimation -- an hour off and an hour on during the day, until he's wearing it 24-7 by a week or week and a half. He seems to hate the process of taking it on and off more than just having it on, so acclimation should be easy enough.
$4,000 hunk of plastic on his head (luckily we will only have to pay about $250 for it -- which is good since he's likely going to need 3-4 of them over the next 12 months as he grows)
Posted on 8/18/14 at 7:42 pm to ILikeLSUToo
Cute kid. Good luck with this. He sounds like a champ!
Posted on 8/18/14 at 7:43 pm to ILikeLSUToo
cute face 
hope everything goes well for your family
hope everything goes well for your family
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