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Old 10-04-2013, 03:00 PM   #2581
Susiec
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14 days... Whoo hoo
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Old 10-04-2013, 03:03 PM   #2582
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Quote:
Originally Posted by aym4Him

WOW! I'm glad he's all right. Thank goodness he had a helmet on!! So scary. DH's uncle was in a slow-speed car vs motorcycle accident (he was on the motorcycle) w/o a helmet. He nearly died and has a TBI as a result. He is now estranged from his sons b/c of it. He literally lost his right mind.

I've heard of CHOP. It has a great heart hospital for kids. I'm sorry your niece had to battle that disease. So scary. I'm so glad she's all right!
He got cut off by a guy who just got out of jail and had no insurance. He slid about 700 ft they said. So we don't ride without our helmets. I think its stupid anyway that you don't have to ride a motorcycle with a helmet but you have to wear one while riding a bicycle....tell me how that makes sense?! I would have been widowed at 34 and my kids, 2 and 4 at the time, would have lost there dad had it not been for his helmet. We keep the helmet in our garage.
Wow...that's horrible. TBI is scary. Its a shame that it put a wedge in his relationship with his sons. And he probably doesn't realize why because of it.
CHOP is a fantastic hospital. They know what they're talking about and doing down there. And the staff is fantastic. It was heart breaking to see her so young and innocent going through the poking, prodding and chemo.....that was horrible. But she's cancer free so I'm very happy for that. She gets checked yearly.
When do they think your son is going to need another surgery? Thats so scary.
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Old 10-04-2013, 03:07 PM   #2583
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Quote:
Originally Posted by shyjade

Sorry, I know this is off topic, but I just had to share.

My daughter fell off her 3 year old mustang when she was 10 years old and he accidentally kicked her in the head as he was trying not to crush her. He punctured the helmet but thankfully it protected her head and she was uninjured.

There's no doubt in my mind that helmet saved her life, or at the very least from severe head trauma. We became a VERY pro helmet family after that!
Helmets should be mandatory as far as I'm concerned. They save lives...period. om so glad your daughters ok.
And there's no off topic....we talk Disney and whatever else we want. Its nice to get to know the people we "talk" to on here. I subscribe to the "free dining and so much more thread" and we talk about anything and everything on there.
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Old 10-04-2013, 03:08 PM   #2584
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Quote:
Originally Posted by Susiec
14 days... Whoo hoo
3 wkks from tomorrow ill be at POP...I can't believe its so close!!
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Old 10-04-2013, 03:20 PM   #2585
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Originally Posted by Kat016 View Post
He got cut off by a guy who just got out of jail and had no insurance. He slid about 700 ft they said. So we don't ride without our helmets. I think its stupid anyway that you don't have to ride a motorcycle with a helmet but you have to wear one while riding a bicycle....tell me how that makes sense?! I would have been widowed at 34 and my kids, 2 and 4 at the time, would have lost there dad had it not been for his helmet. We keep the helmet in our garage.
Wow...that's horrible. TBI is scary. Its a shame that it put a wedge in his relationship with his sons. And he probably doesn't realize why because of it.
CHOP is a fantastic hospital. They know what they're talking about and doing down there. And the staff is fantastic. It was heart breaking to see her so young and innocent going through the poking, prodding and chemo.....that was horrible. But she's cancer free so I'm very happy for that. She gets checked yearly.
When do they think your son is going to need another surgery? Thats so scary.
Here in TX you have to be over 21 and pay extra on your insurance to ride w/o a helmet, I think. I don't get why you'd want to have to pick bugs out of your teeth and risk cracking your head open for a little wind in your hair...We had motorcycles before DS came along and I made sure we were safe, safe, safe!!

When he had his procedure at 4 mos, they said it probably wouldn't happen until he was much, much older (like double digits/teen years). After May's visit, I'm not holding on to that. It would be fantastic if they would be able to do it in the cath lab via his groin instead of having to open him up again but they aren't quite there yet (plus, I think that they are only able to do it for patients who still have their native valve in tact (perfectly round-his is kind of oblong now b/c of the patch, I think) or were born without a valve). We'll cross that bridge when we get there .
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Old 10-04-2013, 03:21 PM   #2586
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15 days till we POP....I'm in packing and list making mode at the present. :-)
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Old 10-04-2013, 03:25 PM   #2587
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Quote:
Originally Posted by aym4Him

Here in TX you have to be over 21 and pay extra on your insurance to ride w/o a helmet, I think. I don't get why you'd want to have to pick bugs out of your teeth and risk cracking your head open for a little wind in your hair...We had motorcycles before DS came along and I made sure we were safe, safe, safe!!

When he had his procedure at 4 mos, they said it probably wouldn't happen until he was much, much older (like double digits/teen years). After May's visit, I'm not holding on to that. It would be fantastic if they would be able to do it in the cath lab via his groin instead of having to open him up again but they aren't quite there yet (plus, I think that they are only able to do it for patients who still have their native valve in tact (perfectly round-his is kind of oblong now b/c of the patch, I think) or were born without a valve). We'll cross that bridge when we get there .
Yeah I don't get it either....
Does he get effected by it at all? Like can he run around and play or is he limited?
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Old 10-04-2013, 03:27 PM   #2588
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Counting Down

24 Days Til POP I can't wait!!
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Old 10-04-2013, 03:51 PM   #2589
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Originally Posted by Kat016 View Post
Yeah I don't get it either....
Does he get effected by it at all? Like can he run around and play or is he limited?
The only thing we've noticed is that he has a little bit of a hard time regulating his body temperature. Other than that, you wouldn't know he has any issues. In fact, we're nervous about being able to obtain a stroller as a wheelchair card on this trip b/c it's not evident by his appearance that he would need it. I know they don't require it, but we are bringing a letter from his cardiac surgeon as proof (I guess he could lift up his shirt). He has pretty good endurance unless it's real hot or real cold. We are blessed! We also know that WDW is a huge place and we wouldn't have made it last year without his stroller (which he slept in a lot), but we also had MAW credentials that helped a LOT. We are borrowing a bigger stroller this year so he'll be more comfortable.

There are studies that are being done right now that look at the effect being on the heart-lung bypass machine under anesthesia has on the neurological development of CHD (congenital heart defect) kids. Some seem to be predisposed to attention deficit issues and other learning disabilities. Fortunately, we aren't aware of any in E, except MAYBE some with memory (though he can tell you EVERYTHING about Star Wars characters!) He also is a sensitive kiddo, though- had issues with certain auditory stimuli and doesn't like big crowds but he's pretty healthy, otherwise. He tends to get a little hyperactive and can be hard to rein in at times, especially if he's with his buddies. I'm guessing we'll get more feedback on that when he starts kinder next year.

They said that when his valve gets to be to the point of needing to be replaced, we'll notice an obvious decrease in stamina. They assured us that we will see the signs clearly. I spent the first year after his 2nd surgery in paranoia that the scar tissue would come back and we wouldn't know it til it was too late. Nowadays, if he takes a nap, I get nervous! LOL
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Old 10-04-2013, 04:23 PM   #2590
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Quote:
Originally Posted by aym4Him

The only thing we've noticed is that he has a little bit of a hard time regulating his body temperature. Other than that, you wouldn't know he has any issues. In fact, we're nervous about being able to obtain a stroller as a wheelchair card on this trip b/c it's not evident by his appearance that he would need it. I know they don't require it, but we are bringing a letter from his cardiac surgeon as proof (I guess he could lift up his shirt). He has pretty good endurance unless it's real hot or real cold. We are blessed! We also know that WDW is a huge place and we wouldn't have made it last year without his stroller (which he slept in a lot), but we also had MAW credentials that helped a LOT. We are borrowing a bigger stroller this year so he'll be more comfortable.

There are studies that are being done right now that look at the effect being on the heart-lung bypass machine under anesthesia has on the neurological development of CHD (congenital heart defect) kids. Some seem to be predisposed to attention deficit issues and other learning disabilities. Fortunately, we aren't aware of any in E, except MAYBE some with memory (though he can tell you EVERYTHING about Star Wars characters!) He also is a sensitive kiddo, though- had issues with certain auditory stimuli and doesn't like big crowds but he's pretty healthy, otherwise. He tends to get a little hyperactive and can be hard to rein in at times, especially if he's with his buddies. I'm guessing we'll get more feedback on that when he starts kinder next year.

They said that when his valve gets to be to the point of needing to be replaced, we'll notice an obvious decrease in stamina. They assured us that we will see the signs clearly. I spent the first year after his 2nd surgery in paranoia that the scar tissue would come back and we wouldn't know it til it was too late. Nowadays, if he takes a nap, I get nervous! LOL
I don't blame you. I'd be paranoid too. I probably would be his entire life though. I'm glad he can live life like a "normal" child though. That helps, I'm sure.
I had to laugh at your star wars comment....my son is the same way. He can tell you every character and every roll in all the Star Wars and Pirates Of The Caribbean movies. Those are his favorites.
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Old 10-04-2013, 07:58 PM   #2591
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My 10 yr old daughter has no filter either, she gets that from me. So she makes loud comments about people smoking and people who don't wear helmets while riding a motorcycle. Lol
I'm sooooo glad your babys doing good. 2 open heart surgeries so young...I couldn't imagine. Hugs to him... <3
Haha both my kids point out these things too!!!
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Old 10-04-2013, 10:16 PM   #2592
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We are here now in building 5. We had a refrig and was told they have been installed in this building.
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Old 10-04-2013, 11:24 PM   #2593
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7 days for me till mother and son trip can't wait
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Old 10-05-2013, 05:44 AM   #2594
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2 weeks from this moment we well be boarding the plan headed to Disney. I can't believe it's finally almost here!

And 3 weeks from now I will be very sad to be back home....
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Old 10-05-2013, 06:03 AM   #2595
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2 weeks from this moment we well be boarding the plan headed to Disney. I can't believe it's finally almost here! And 3 weeks from now I will be very sad to be back home....
Same - except driving! I can't focus on much right now - just pulling in to POP feels like home!!
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