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One more question. Does the cold weather bother any of your children? Does it make them hurt more, or get tired more easily? How does it affect them, if at all?

Thanks,

e *Ü*

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One more question. Does the cold weather bother any of your children? Does it make them hurt more, or get tired more easily? How does it affect them, if at all?

Thanks,

e *Ü*

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Joey who is 5 years old with unspecific Mito. The cold weather really effects his muscles, makes them very still and painful. We have found in the mornings that if we get him dressed by the heat vent that really helps. Or he likes to get dressed underr the covers. He will even tell us his legs do not work good when they are cold. He will say they are out of batteries. Joey's therapies have really noticed weakness since the colder weather has been here.

Good luck. Hope this helps!!! Tamara e wrote:

One more question. Does the cold weather bother any of your children? Does it make them hurt more, or get tired more easily? How does it affect them, if at all?

Thanks,

e *Ü*Please contact mito-owner with any problems or questions. __________________________________________________

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Joey who is 5 years old with unspecific Mito. The cold weather really effects his muscles, makes them very still and painful. We have found in the mornings that if we get him dressed by the heat vent that really helps. Or he likes to get dressed underr the covers. He will even tell us his legs do not work good when they are cold. He will say they are out of batteries. Joey's therapies have really noticed weakness since the colder weather has been here.

Good luck. Hope this helps!!! Tamara e wrote:

One more question. Does the cold weather bother any of your children? Does it make them hurt more, or get tired more easily? How does it affect them, if at all?

Thanks,

e *Ü*Please contact mito-owner with any problems or questions. __________________________________________________

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Thanks for letting me know that Tamara. It sounds like getting dressed by the heat vent is a good idea. Devin doesn't really complain much about his legs hurting, so that's nice that Joey can/will tell you how he's feeling.

Thanks for letting me know.

e *Ü*

Re: Cold Weather

Joey who is 5 years old with unspecific Mito. The cold weather really effects his muscles, makes them very still and painful. We have found in the mornings that if we get him dressed by the heat vent that really helps. Or he likes to get dressed underr the covers. He will even tell us his legs do not work good when they are cold. He will say they are out of batteries. Joey's therapies have really noticed weakness since the colder weather has been here.

Good luck. Hope this helps!!! Tamara e wrote:

One more question. Does the cold weather bother any of your children? Does it make them hurt more, or get tired more easily? How does it affect them, if at all?

Thanks,

e *Ü*Please contact mito-owner with any problems or questions.

__________________________________________________

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Hi e:

Me again. The cold doesn't affect Leah a whole lot because she isn't outside

a whole lot. But we do notice when we take her sledding even though she

is bundled up properly; her hands and feet remain cold and she is sort of

tired out; and that's only from about 15 to 20 minutes of sledding. We joke

around our house it takes almost as much time getting Leah ready as it is

for the amount of time she actually sleds. But it is so worth it to see

the smile on her face as she is going down the hill and it's big time work

out for us as we pull her back up the hill.

Nerenhausen

mom to Leah

e wrote:

One more question. Does

the cold weather bother any of your children? Does it make them hurt more,

or get tired more easily? How does it affect them, if at all?

Thanks,

e *Ü*

Please contact mito-owner with any problems or questions.

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Hi ,

Thank you for your replies about the walker and the cold weather. I'm glad that someone out there makes a walker with a seat. I think I saw one at our PT office, so I'll check with her tomorrow morning. Devin really, really needs one! With this cold, it's getting harder and harder for him to get around. He seemed to get around ok when it was above 40 degrees or so, but when it got lower than that is when all the problems started.

May I add that Leah is a blessed little girl to have parents like you to take her sledding and to get out and enjoy the outdoors, even if it's not so often. I can't imagine how much work that is, but you're right, the smile on her face must be priceless!

e *Ü*

Re: Cold Weather

Hi e:Me again. The cold doesn't affect Leah a whole lot because she isn't outside a whole lot. But we do notice when we take her sledding even though she is bundled up properly; her hands and feet remain cold and she is sort of tired out; and that's only from about 15 to 20 minutes of sledding. We joke around our house it takes almost as much time getting Leah ready as it is for the amount of time she actually sleds. But it is so worth it to see the smile on her face as she is going down the hill and it's big time work out for us as we pull her back up the hill. Nerenhausenmom to Leah

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Oddly seems to do FAR better in the winter than the

summer...

With the exception of last January (first major flare, in hospital

for a week) he does REALLY well through the winters, but this past

summer was a MONSTER for us, he had super high fevers, always got

sick, freaked me out, regressed etc.... since September, EVEN after

his biopsy in October, he has done really well!

I know alot of kids are worse in the winter though... not sure why

its opposite for us...

Keely

> One more question. Does the cold weather bother any of your

children? Does it make them hurt more, or get tired more easily? How

does it affect them, if at all?

>

> Thanks,

> e *Ü*

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Oddly seems to do FAR better in the winter than the

summer...

With the exception of last January (first major flare, in hospital

for a week) he does REALLY well through the winters, but this past

summer was a MONSTER for us, he had super high fevers, always got

sick, freaked me out, regressed etc.... since September, EVEN after

his biopsy in October, he has done really well!

I know alot of kids are worse in the winter though... not sure why

its opposite for us...

Keely

> One more question. Does the cold weather bother any of your

children? Does it make them hurt more, or get tired more easily? How

does it affect them, if at all?

>

> Thanks,

> e *Ü*

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Keely,

I'm glad does well in the winter! Being up in Canada, I know that's somewhat of a relief! You can't escape the cold up there!

So how is doing with is AFOs? Devin is doing very well with his! Had his first PT session with them today, and the therapist was thrilled with how he is keeping his toes and feet straight, not toe walking, and they help with the stretching program. I really, really hope does well with his.

e

Re: Cold Weather

Oddly seems to do FAR better in the winter than the summer... With the exception of last January (first major flare, in hospital for a week) he does REALLY well through the winters, but this past summer was a MONSTER for us, he had super high fevers, always got sick, freaked me out, regressed etc.... since September, EVEN after his biopsy in October, he has done really well! I know alot of kids are worse in the winter though... not sure why its opposite for us...Keely

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Keely,

I'm glad does well in the winter! Being up in Canada, I know that's somewhat of a relief! You can't escape the cold up there!

So how is doing with is AFOs? Devin is doing very well with his! Had his first PT session with them today, and the therapist was thrilled with how he is keeping his toes and feet straight, not toe walking, and they help with the stretching program. I really, really hope does well with his.

e

Re: Cold Weather

Oddly seems to do FAR better in the winter than the summer... With the exception of last January (first major flare, in hospital for a week) he does REALLY well through the winters, but this past summer was a MONSTER for us, he had super high fevers, always got sick, freaked me out, regressed etc.... since September, EVEN after his biopsy in October, he has done really well! I know alot of kids are worse in the winter though... not sure why its opposite for us...Keely

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