What's upsetting you today? - Page 325

jinx · 11-17-2009, 06:44 PM

Thanks Clod. We were referred to a genetic counselor, which is kind of an awkward thing to discuss... I'm interested for sure, the more info the better.... I think. Eh, we'll see. I just don't want the kids to feel weird about it.

monster · 11-17-2009, 06:55 PM

Bummer Jinx. I don't think I knew about the finger thing. Is it disabling or just irritating? Or am I being too nosy?

monster · 11-17-2009, 06:56 PM

Do either of you have it too, or is it something that requires both parents to be carriers, or is that what you'll find out? Or am I being too nosy some more?

jinx · 11-17-2009, 07:07 PM

Spence's right hand had just about every bone deformity you probable never heard of... contractures, deltaphalages camptodactyly, repaired polydactyly, etc etc I forget what else. The fingers of his left hand were just all fused together.
When he was born the doctors were all "no idea why, luck of the draw", and he had surgery to repair what they could. Then ippy came along with 3 major and 1 minor contractures. Todays xrays showed that her affected joints look the same as spencer's affected joints.

Genetics were mentioned but no one in either of our families had these issues that anyone can remember.

So basically the kids have fingers that have very little range of motion. Like 55-150 degrees instead of 0 to 180 (and spence has one that doesnt move at all). Today the surgeon said he could change the range of motion but not likely increase it, and complications from surgery could actually reduce it. Neither kid is interested at this point.

monster · 11-17-2009, 07:36 PM

I don't blame them. So if it is genetic, sounds like the chances of them passing it one are very minor. I presume they cope pretty well with most stuff or you'd've mentioned it before. Thanks for answering my questions.

skysidhe · 11-17-2009, 08:42 PM

I was worried about meningitis too but I'm glad it is gone.

It's tough to go through those times when things aren't right with kids health but they have two great parents who are over comers so they won't let it hold him back. Not that that makes it any easier. I'm just saying ya aren't hand wringers and that's the best treatment of all.

ZenGum · 11-17-2009, 10:25 PM

Quote:

Originally Posted by skysidhe

I was worried about meningitis too but I'm glad it is gone.

It's tough to go through those times when things aren't right with kids health but they have two great parents who are over comers so they won't let it hold him back. Not that that makes it any easier. I'm just saying ya aren't hand wringers and that's the best treatment of all.

did you mean to do that? or was it just an off-the-cuff comment?

This stuff is news to me, damn it sounds like a serious challenge to deal with. Fingers are mighty important.

Are their feet affected too?

Griff · 11-18-2009, 05:28 AM

Sounds like a difficult thing to deal with. Let's hope medicine continues to progress.

skysidhe · 11-18-2009, 06:23 AM

Quote:

Originally Posted by ZenGum

did you mean to do that? or was it just an off-the-cuff comment?

OMG
no Zen

sorry jinx

That means they are not excessive worriers so that it would hinder the kids growth. I wouldn't be flip like that when it comes to something serious.

monster · 11-18-2009, 07:39 AM

2 boxes of tea.

Pie · 11-18-2009, 07:42 AM

I'm sure, by now, jinx and LJ are used to a joke or two. Anyone dealing with a chronic condition in themselves or a loved one learns to use humor to their best advantage.

jinx · 11-18-2009, 10:52 AM

Yeah, it's not a huge big deal, doesn't really hold them back from much at all. Gloves are difficult... pro baseball isn't in their future. I was just hoping it could be made a little easier for them at this point. Like if they could flatten their hands they could do more gymnastic stuff... nothing really earth shattering.

xoxoxoBruce · 11-18-2009, 11:03 AM

I didn't notice it.

glatt · 11-18-2009, 01:18 PM

Quote:

Originally Posted by Pie

I'm sure, by now, jinx and LJ are used to a joke or two. Anyone dealing with a chronic condition in themselves or a loved one learns to use humor to their best advantage.

I hope so. Because:

monster · 11-18-2009, 03:22 PM

11-17-2009, 06:44 PM	#4861
jinx Come on, cat. Join Date: Nov 2003 Location: general vicinity of Philadelphia area Posts: 7,013	Thanks Clod. We were referred to a genetic counselor, which is kind of an awkward thing to discuss... I'm interested for sure, the more info the better.... I think. Eh, we'll see. I just don't want the kids to feel weird about it. __________________ Crying won't help you, praying won't do you no good.

11-17-2009, 06:55 PM	#4862
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	Bummer Jinx. I don't think I knew about the finger thing. Is it disabling or just irritating? Or am I being too nosy? __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

11-17-2009, 06:56 PM	#4863
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	Do either of you have it too, or is it something that requires both parents to be carriers, or is that what you'll find out? Or am I being too nosy some more? __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

11-17-2009, 07:07 PM	#4864
jinx Come on, cat. Join Date: Nov 2003 Location: general vicinity of Philadelphia area Posts: 7,013	Spence's right hand had just about every bone deformity you probable never heard of... contractures, deltaphalages camptodactyly, repaired polydactyly, etc etc I forget what else. The fingers of his left hand were just all fused together. When he was born the doctors were all "no idea why, luck of the draw", and he had surgery to repair what they could. Then ippy came along with 3 major and 1 minor contractures. Todays xrays showed that her affected joints look the same as spencer's affected joints. Genetics were mentioned but no one in either of our families had these issues that anyone can remember. So basically the kids have fingers that have very little range of motion. Like 55-150 degrees instead of 0 to 180 (and spence has one that doesnt move at all). Today the surgeon said he could change the range of motion but not likely increase it, and complications from surgery could actually reduce it. Neither kid is interested at this point. __________________ Crying won't help you, praying won't do you no good.

11-17-2009, 07:36 PM	#4865
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	I don't blame them. So if it is genetic, sounds like the chances of them passing it one are very minor. I presume they cope pretty well with most stuff or you'd've mentioned it before. Thanks for answering my questions. __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

11-17-2009, 08:42 PM	#4866
skysidhe ~~Life is either a daring adventure or nothing.~~ Join Date: Apr 2006 Posts: 6,828	I was worried about meningitis too but I'm glad it is gone. It's tough to go through those times when things aren't right with kids health but they have two great parents who are over comers so they won't let it hold him back. Not that that makes it any easier. I'm just saying ya aren't hand wringers and that's the best treatment of all.

11-18-2009, 05:28 AM	#4868
Griff still says videotape Join Date: Feb 2001 Posts: 26,813	Sounds like a difficult thing to deal with. Let's hope medicine continues to progress. __________________ If you would only recognize that life is hard, things would be so much easier for you. - Louis D. Brandeis

11-18-2009, 07:39 AM	#4870
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	2 boxes of tea. __________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

11-18-2009, 07:42 AM	#4871
Pie Gone and done Join Date: Sep 2001 Posts: 4,808	I'm sure, by now, jinx and LJ are used to a joke or two. Anyone dealing with a chronic condition in themselves or a loved one learns to use humor to their best advantage. __________________ per·son \ˈpər-sən\ (noun) - an ephemeral collection of small, irrational decisions The fun thing about evolution (and science in general) is that it happens whether you believe in it or not.

11-18-2009, 10:52 AM	#4872
jinx Come on, cat. Join Date: Nov 2003 Location: general vicinity of Philadelphia area Posts: 7,013	Yeah, it's not a huge big deal, doesn't really hold them back from much at all. Gloves are difficult... pro baseball isn't in their future. I was just hoping it could be made a little easier for them at this point. Like if they could flatten their hands they could do more gymnastic stuff... nothing really earth shattering. __________________ Crying won't help you, praying won't do you no good.

11-18-2009, 11:03 AM	#4873
xoxoxoBruce The future is unwritten Join Date: Oct 2002 Posts: 71,105	I didn't notice it. __________________ The descent of man ~ Nixon, Friedman, Reagan, Trump.

11-18-2009, 03:22 PM	#4875
monster I hear them call the tide Join Date: Dec 2005 Location: Perpetual Chaos Posts: 30,852	__________________ The most difficult thing is the decision to act, the rest is merely tenacity Amelia Earhart

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