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You just have to put your foot down. I know how hard it is, but now after seeing how healthy zach has been by not having him in school , w/ the "germs" they are starting to realize. Have the dr. write them a note. No one sick is allowed to be around my son, no one is allowed to smoke around my son. During flu season i keep my kids at bay from malls, and over crowded germ infested places. Its not being paranoid or over protective, but its being realistic. We know our medically fragile kids can't handle stuff.

mom to zach 4, alexis 6 TODAY!! Happy birthday is my sweet sweet girl matts_mom96 wrote:

Hi everyone, im so fustrated right now. As a rule i try to avoid anyone who is sick, because Matt and I catch everything we are exposed to. I cant for the life of me, get it through some family members thick heads, that we cannot expose ourselves to thier germs, be it through direct contact with them or by being around someone who has been around them. Example: my sister calls Tuesday morning, she is very sick with respitory illness and vomiting, she babysits 3 boys, and she needs someone to drive them to school because she is to ill to do it. (and will not take the day off from babysitting, she cant afford to) She calls me of course and i would do anything to help my sister, but this to me is just putting me and Matt at risk. The boys are fine, but can't they carry her "bug" to us, without

them getting sick from it?? Or am i overreacting?? Needless to say we are on the phone and she got me, after long deliberation and procrastination, i ended up driving the boys. Here it is Friday and Matt and i are sick with same syptoms as my sister. Last night was so bad for Matt, he started coughing and refluxing, that his nurse had to turn off his overnight feeding. And he is coughing up a storm again tonight, but at least he is keeping down the g-tube feeding so far. Once again can i be overreacting? Im a "better safe than sorry" kinda gal, and i just wish some family members outside my immediate homefront would respect that, i have explained over and over again about our mito, and how our catching "bugs" really affects us and how hard it is to bounce back. I know my sister doesnt want to see us sick, but i dont think she is grasping that me and Matt dont need

bad "germs" to feel sick, we are feeling sick all the time just from the mito alone. She has also said to me if i dont allow me and Matt to be exposed to some germs we will never be able to fight off germs. Hell i know that, but to jump from a frying pan into a fire, just dont seem right to me and now im kicking myself for giving in on Tuesday. What do you all think. Am i overreacting?? I just dont know anymore. Barb Please contact mito-owner with any problems or questions. __________________________________________________

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You just have to put your foot down. I know how hard it is, but now after seeing how healthy zach has been by not having him in school , w/ the "germs" they are starting to realize. Have the dr. write them a note. No one sick is allowed to be around my son, no one is allowed to smoke around my son. During flu season i keep my kids at bay from malls, and over crowded germ infested places. Its not being paranoid or over protective, but its being realistic. We know our medically fragile kids can't handle stuff.

mom to zach 4, alexis 6 TODAY!! Happy birthday is my sweet sweet girl matts_mom96 wrote:

Hi everyone, im so fustrated right now. As a rule i try to avoid anyone who is sick, because Matt and I catch everything we are exposed to. I cant for the life of me, get it through some family members thick heads, that we cannot expose ourselves to thier germs, be it through direct contact with them or by being around someone who has been around them. Example: my sister calls Tuesday morning, she is very sick with respitory illness and vomiting, she babysits 3 boys, and she needs someone to drive them to school because she is to ill to do it. (and will not take the day off from babysitting, she cant afford to) She calls me of course and i would do anything to help my sister, but this to me is just putting me and Matt at risk. The boys are fine, but can't they carry her "bug" to us, without

them getting sick from it?? Or am i overreacting?? Needless to say we are on the phone and she got me, after long deliberation and procrastination, i ended up driving the boys. Here it is Friday and Matt and i are sick with same syptoms as my sister. Last night was so bad for Matt, he started coughing and refluxing, that his nurse had to turn off his overnight feeding. And he is coughing up a storm again tonight, but at least he is keeping down the g-tube feeding so far. Once again can i be overreacting? Im a "better safe than sorry" kinda gal, and i just wish some family members outside my immediate homefront would respect that, i have explained over and over again about our mito, and how our catching "bugs" really affects us and how hard it is to bounce back. I know my sister doesnt want to see us sick, but i dont think she is grasping that me and Matt dont need

bad "germs" to feel sick, we are feeling sick all the time just from the mito alone. She has also said to me if i dont allow me and Matt to be exposed to some germs we will never be able to fight off germs. Hell i know that, but to jump from a frying pan into a fire, just dont seem right to me and now im kicking myself for giving in on Tuesday. What do you all think. Am i overreacting?? I just dont know anymore. Barb Please contact mito-owner with any problems or questions. __________________________________________________

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You are NOT at all overracting!!! That is how germs are spread.

Kerry

-----Original Message-----From: matts_mom96 Sent: Saturday, January 22, 2005 4:32 AMTo: Mito Subject: am i over reacting?Hi everyone, im so fustrated right now. As a rule i try to avoid anyone who is sick, because Matt and I catch everything we are exposed to. I cant for the life of me, get it through some family members thick heads, that we cannot expose ourselves to thier germs, be it through direct contact with them or by being around someone who has been around them. Example: my sister calls Tuesday morning, she is very sick with respitory illness and vomiting, she babysits 3 boys, and she needs someone to drive them to school because she is to ill to do it. (and will not take the day off from babysitting, she cant afford to) She calls me of course and i would do anything to help my sister, but this to me is just putting me and Matt at risk. The boys are fine, but can't they carry her "bug" to us, without them getting sick from it?? Or am i overreacting?? Needless to say we are on the phone and she got me, after long deliberation and procrastination, i ended up driving the boys. Here it is Friday and Matt and i are sick with same syptoms as my sister. Last night was so bad for Matt, he started coughing and refluxing, that his nurse had to turn off his overnight feeding. And he is coughing up a storm again tonight, but at least he is keeping down the g-tube feeding so far. Once again can i be overreacting? Im a "better safe than sorry" kinda gal, and i just wish some family members outside my immediate homefront would respect that, i have explained over and over again about our mito, and how our catching "bugs" really affects us and how hard it is to bounce back. I know my sister doesnt want to see us sick, but i dont think she is grasping that me and Matt dont need bad "germs" to feel sick, we are feeling sick all the time just from the mito alone. She has also said to me if i dont allow me and Matt to be exposed to some germs we will never be able to fight off germs. Hell i know that, but to jump from a frying pan into a fire, just dont seem right to me and now im kicking myself for giving in on Tuesday. What do you all think. Am i overreacting?? I just dont know anymore. Barb Please contact mito-owner with any problems or questions.

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You are NOT at all overracting!!! That is how germs are spread.

Kerry

-----Original Message-----From: matts_mom96 Sent: Saturday, January 22, 2005 4:32 AMTo: Mito Subject: am i over reacting?Hi everyone, im so fustrated right now. As a rule i try to avoid anyone who is sick, because Matt and I catch everything we are exposed to. I cant for the life of me, get it through some family members thick heads, that we cannot expose ourselves to thier germs, be it through direct contact with them or by being around someone who has been around them. Example: my sister calls Tuesday morning, she is very sick with respitory illness and vomiting, she babysits 3 boys, and she needs someone to drive them to school because she is to ill to do it. (and will not take the day off from babysitting, she cant afford to) She calls me of course and i would do anything to help my sister, but this to me is just putting me and Matt at risk. The boys are fine, but can't they carry her "bug" to us, without them getting sick from it?? Or am i overreacting?? Needless to say we are on the phone and she got me, after long deliberation and procrastination, i ended up driving the boys. Here it is Friday and Matt and i are sick with same syptoms as my sister. Last night was so bad for Matt, he started coughing and refluxing, that his nurse had to turn off his overnight feeding. And he is coughing up a storm again tonight, but at least he is keeping down the g-tube feeding so far. Once again can i be overreacting? Im a "better safe than sorry" kinda gal, and i just wish some family members outside my immediate homefront would respect that, i have explained over and over again about our mito, and how our catching "bugs" really affects us and how hard it is to bounce back. I know my sister doesnt want to see us sick, but i dont think she is grasping that me and Matt dont need bad "germs" to feel sick, we are feeling sick all the time just from the mito alone. She has also said to me if i dont allow me and Matt to be exposed to some germs we will never be able to fight off germs. Hell i know that, but to jump from a frying pan into a fire, just dont seem right to me and now im kicking myself for giving in on Tuesday. What do you all think. Am i overreacting?? I just dont know anymore. Barb Please contact mito-owner with any problems or questions.

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Barab,

My $0.02 is that you are NOT over reacting! it drives me crazy when people say

to us that we need to let Lexi be exposed to germs so she will " toughen up " her

immune system. yeah, right. THOSE people have not sat by her hospital bed the

last 30x, watching as she fights for every breath and struggles to keep her O2

sats above 80%. You are right in in your reaction to your sister's request.

I'm sure it wasn't malicoius, but she may just still not get it, that it really

CAN be a matter of life and death. What is a simple cold to other people can

really be life threatening to those of us in the mito community. Hold your

groudn, and buy BIG bottles of Purell! :)

ruth

mito mom to Mitch (nearly 10...yikes!) and Lexi (learly 7...yikes again!), both

mito affected and my treasures

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Barab,

My $0.02 is that you are NOT over reacting! it drives me crazy when people say

to us that we need to let Lexi be exposed to germs so she will " toughen up " her

immune system. yeah, right. THOSE people have not sat by her hospital bed the

last 30x, watching as she fights for every breath and struggles to keep her O2

sats above 80%. You are right in in your reaction to your sister's request.

I'm sure it wasn't malicoius, but she may just still not get it, that it really

CAN be a matter of life and death. What is a simple cold to other people can

really be life threatening to those of us in the mito community. Hold your

groudn, and buy BIG bottles of Purell! :)

ruth

mito mom to Mitch (nearly 10...yikes!) and Lexi (learly 7...yikes again!), both

mito affected and my treasures

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I totally agree with you, Barb.

We have the same rule for Maddie's therapists, teachers and all family members who come into the house. If they have been exposed to something they are to call us and let us decide whether or not Maddie would be at risk. We have the same problem with family members saying "well they need to be exposed..." and I agree that MOST kids do, but not any of mine. Simple viruses and colds hit Maddie 10 times harder and last twice as long as the other kids. What made some of the family realize how serious it is for Maddie was to see her mouth blue from coughing and absolutely no energy (totally lethargic) and the other kids somewhat active with the same illness. We really shut down in the late fall through the spring. Sometimes it seems hard on the other kids, but this is the life we have to live in order to keep Maddie well. We try to make up for it in other ways, but I think my kids are great and really have an understanding (as well as a 3 1/2 yr old and 7 1/2 yr old can) as to what is going on with Maddie and why we have to do what we do. We are the only ones who can protect our children, and sometimes hurt feelings (from family) are the result. It is difficult to explain to them what is going on with our children- think of how many DOCTORS don't know or understand this disease- how can we explain it to everyone who is involved with our children? Don't feel badly about keeping him well- that is why God gave us our Mother's intuition. Hope you feel well soon.

Holly Rubio

am i over reacting?

Hi everyone, im so fustrated right now. As a rule i try to avoid anyone who is sick, because Matt and I catch everything we are exposed to. I cant for the life of me, get it through some family members thick heads, that we cannot expose ourselves to thier germs, be it through direct contact with them or by being around someone who has been around them. Example: my sister calls Tuesday morning, she is very sick with respitory illness and vomiting, she babysits 3 boys, and she needs someone to drive them to school because she is to ill to do it. (and will not take the day off from babysitting, she cant afford to) She calls me of course and i would do anything to help my sister, but this to me is just putting me and Matt at risk. The boys are fine, but can't they carry her "bug" to us, without them getting sick from it?? Or am i overreacting?? Needless to say we are on the phone and she got me, after long deliberation and procrastination, i ended up driving the boys. Here it is Friday and Matt and i are sick with same syptoms as my sister. Last night was so bad for Matt, he started coughing and refluxing, that his nurse had to turn off his overnight feeding. And he is coughing up a storm again tonight, but at least he is keeping down the g-tube feeding so far. Once again can i be overreacting? Im a "better safe than sorry" kinda gal, and i just wish some family members outside my immediate homefront would respect that, i have explained over and over again about our mito, and how our catching "bugs" really affects us and how hard it is to bounce back. I know my sister doesnt want to see us sick, but i dont think she is grasping that me and Matt dont need bad "germs" to feel sick, we are feeling sick all the time just from the mito alone. She has also said to me if i dont allow me and Matt to be exposed to some germs we will never be able to fight off germs. Hell i know that, but to jump from a frying pan into a fire, just dont seem right to me and now im kicking myself for giving in on Tuesday. What do you all think. Am i overreacting?? I just dont know anymore. Barb Please contact mito-owner with any problems or questions.

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I totally agree with you, Barb.

We have the same rule for Maddie's therapists, teachers and all family members who come into the house. If they have been exposed to something they are to call us and let us decide whether or not Maddie would be at risk. We have the same problem with family members saying "well they need to be exposed..." and I agree that MOST kids do, but not any of mine. Simple viruses and colds hit Maddie 10 times harder and last twice as long as the other kids. What made some of the family realize how serious it is for Maddie was to see her mouth blue from coughing and absolutely no energy (totally lethargic) and the other kids somewhat active with the same illness. We really shut down in the late fall through the spring. Sometimes it seems hard on the other kids, but this is the life we have to live in order to keep Maddie well. We try to make up for it in other ways, but I think my kids are great and really have an understanding (as well as a 3 1/2 yr old and 7 1/2 yr old can) as to what is going on with Maddie and why we have to do what we do. We are the only ones who can protect our children, and sometimes hurt feelings (from family) are the result. It is difficult to explain to them what is going on with our children- think of how many DOCTORS don't know or understand this disease- how can we explain it to everyone who is involved with our children? Don't feel badly about keeping him well- that is why God gave us our Mother's intuition. Hope you feel well soon.

Holly Rubio

am i over reacting?

Hi everyone, im so fustrated right now. As a rule i try to avoid anyone who is sick, because Matt and I catch everything we are exposed to. I cant for the life of me, get it through some family members thick heads, that we cannot expose ourselves to thier germs, be it through direct contact with them or by being around someone who has been around them. Example: my sister calls Tuesday morning, she is very sick with respitory illness and vomiting, she babysits 3 boys, and she needs someone to drive them to school because she is to ill to do it. (and will not take the day off from babysitting, she cant afford to) She calls me of course and i would do anything to help my sister, but this to me is just putting me and Matt at risk. The boys are fine, but can't they carry her "bug" to us, without them getting sick from it?? Or am i overreacting?? Needless to say we are on the phone and she got me, after long deliberation and procrastination, i ended up driving the boys. Here it is Friday and Matt and i are sick with same syptoms as my sister. Last night was so bad for Matt, he started coughing and refluxing, that his nurse had to turn off his overnight feeding. And he is coughing up a storm again tonight, but at least he is keeping down the g-tube feeding so far. Once again can i be overreacting? Im a "better safe than sorry" kinda gal, and i just wish some family members outside my immediate homefront would respect that, i have explained over and over again about our mito, and how our catching "bugs" really affects us and how hard it is to bounce back. I know my sister doesnt want to see us sick, but i dont think she is grasping that me and Matt dont need bad "germs" to feel sick, we are feeling sick all the time just from the mito alone. She has also said to me if i dont allow me and Matt to be exposed to some germs we will never be able to fight off germs. Hell i know that, but to jump from a frying pan into a fire, just dont seem right to me and now im kicking myself for giving in on Tuesday. What do you all think. Am i overreacting?? I just dont know anymore. Barb Please contact mito-owner with any problems or questions.

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Thank you all for your thoughts and support on this matter. Im

feeling abit better today, but Matt is still in bed sick. The snow

storm has hit, and ive been in contact with Matts pediatrician and

our metobolic specialist and neuro, and i have a choice of a local

hospital or we can try to drive down to the city, to the childrens

hosp. but either way we will be covered before we hit the ER of our

choice. At least i got that covered by the docs. I know my sister

dont mean us any harm. I thought about what some of you suggested,

i will just put my foot down next time. And i think i might put up

a caringbridge page for our extended family, maybe then they can

read the updates for themselves, and go to other links and learn

more too. I know alot of folks have used caringbridge webpages,

and if i put a site up for Matt, i hope some of you will allow us to

put up your links. Let me know if it would be ok to use your links,

as i would never put links to your sites without your permission.

thanks again to you all, i really do feel better about the way i

feel about this situation. Barb

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Thank you all for your thoughts and support on this matter. Im

feeling abit better today, but Matt is still in bed sick. The snow

storm has hit, and ive been in contact with Matts pediatrician and

our metobolic specialist and neuro, and i have a choice of a local

hospital or we can try to drive down to the city, to the childrens

hosp. but either way we will be covered before we hit the ER of our

choice. At least i got that covered by the docs. I know my sister

dont mean us any harm. I thought about what some of you suggested,

i will just put my foot down next time. And i think i might put up

a caringbridge page for our extended family, maybe then they can

read the updates for themselves, and go to other links and learn

more too. I know alot of folks have used caringbridge webpages,

and if i put a site up for Matt, i hope some of you will allow us to

put up your links. Let me know if it would be ok to use your links,

as i would never put links to your sites without your permission.

thanks again to you all, i really do feel better about the way i

feel about this situation. Barb

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