My heart broke this afternoon...

I

izemmom

New member
Hi Em. You've gotten lots of good suggestions already. I just wanted to add that we have always tried to make PT/ neb's time "Emily's choice" time. She picks what to watch or listen to, usually the Wiggles) she picks which toys to have handy usuallly Legos or her CareBear plastic figures...lately she has been picking which parent will do PT with her (usually Daddy - yaaaaayyy! Gotta love a Daddy's girl).

It took only about 2 weeks for us to get our vest once it was prescribed. It is a lifesaver. SHe will sit for it, I"m sure. YOu'll love it. As far as the nebs, we usually gave Em an extra neb cup to hold//playwith. Now, she holds her own cup most of the time!

Hang in there. It will get better with time. I"ll be thinking of you!
 
I

izemmom

New member
Hi Em. You've gotten lots of good suggestions already. I just wanted to add that we have always tried to make PT/ neb's time "Emily's choice" time. She picks what to watch or listen to, usually the Wiggles) she picks which toys to have handy usuallly Legos or her CareBear plastic figures...lately she has been picking which parent will do PT with her (usually Daddy - yaaaaayyy! Gotta love a Daddy's girl).

It took only about 2 weeks for us to get our vest once it was prescribed. It is a lifesaver. SHe will sit for it, I"m sure. YOu'll love it. As far as the nebs, we usually gave Em an extra neb cup to hold//playwith. Now, she holds her own cup most of the time!

Hang in there. It will get better with time. I"ll be thinking of you!
 
I

izemmom

New member
Hi Em. You've gotten lots of good suggestions already. I just wanted to add that we have always tried to make PT/ neb's time "Emily's choice" time. She picks what to watch or listen to, usually the Wiggles) she picks which toys to have handy usuallly Legos or her CareBear plastic figures...lately she has been picking which parent will do PT with her (usually Daddy - yaaaaayyy! Gotta love a Daddy's girl).

It took only about 2 weeks for us to get our vest once it was prescribed. It is a lifesaver. SHe will sit for it, I"m sure. YOu'll love it. As far as the nebs, we usually gave Em an extra neb cup to hold//playwith. Now, she holds her own cup most of the time!

Hang in there. It will get better with time. I"ll be thinking of you!
 
I

izemmom

New member
Hi Em. You've gotten lots of good suggestions already. I just wanted to add that we have always tried to make PT/ neb's time "Emily's choice" time. She picks what to watch or listen to, usually the Wiggles) she picks which toys to have handy usuallly Legos or her CareBear plastic figures...lately she has been picking which parent will do PT with her (usually Daddy - yaaaaayyy! Gotta love a Daddy's girl).

It took only about 2 weeks for us to get our vest once it was prescribed. It is a lifesaver. SHe will sit for it, I"m sure. YOu'll love it. As far as the nebs, we usually gave Em an extra neb cup to hold//playwith. Now, she holds her own cup most of the time!

Hang in there. It will get better with time. I"ll be thinking of you!
 
I

izemmom

New member
Hi Em. You've gotten lots of good suggestions already. I just wanted to add that we have always tried to make PT/ neb's time "Emily's choice" time. She picks what to watch or listen to, usually the Wiggles) she picks which toys to have handy usuallly Legos or her CareBear plastic figures...lately she has been picking which parent will do PT with her (usually Daddy - yaaaaayyy! Gotta love a Daddy's girl).

It took only about 2 weeks for us to get our vest once it was prescribed. It is a lifesaver. SHe will sit for it, I"m sure. YOu'll love it. As far as the nebs, we usually gave Em an extra neb cup to hold//playwith. Now, she holds her own cup most of the time!

Hang in there. It will get better with time. I"ll be thinking of you!
 
W

wmkimmel

New member
Being consistent is key. I used to have a special toy and DVD they would watch. Reward with there favorite food and a sticker when there done.
However you get it done, get it done. Many a time I started on one end of the room and we ended up on the other side.
Do not forget that this disease is just as hard on the parents as it is on the child and learn some stress reducing techniques for yourself.
I found meditation to be very helpful and I would reward myself after a treatment was done as well. (Favorite cup of tea with honey etc.)
Remember that by being consistent the child will "Get used to it" and fight there treatments less and less.
Get them to spit the mucus out if you can manage.
 
W

wmkimmel

New member
Being consistent is key. I used to have a special toy and DVD they would watch. Reward with there favorite food and a sticker when there done.
However you get it done, get it done. Many a time I started on one end of the room and we ended up on the other side.
Do not forget that this disease is just as hard on the parents as it is on the child and learn some stress reducing techniques for yourself.
I found meditation to be very helpful and I would reward myself after a treatment was done as well. (Favorite cup of tea with honey etc.)
Remember that by being consistent the child will "Get used to it" and fight there treatments less and less.
Get them to spit the mucus out if you can manage.
 
W

wmkimmel

New member
Being consistent is key. I used to have a special toy and DVD they would watch. Reward with there favorite food and a sticker when there done.
However you get it done, get it done. Many a time I started on one end of the room and we ended up on the other side.
Do not forget that this disease is just as hard on the parents as it is on the child and learn some stress reducing techniques for yourself.
I found meditation to be very helpful and I would reward myself after a treatment was done as well. (Favorite cup of tea with honey etc.)
Remember that by being consistent the child will "Get used to it" and fight there treatments less and less.
Get them to spit the mucus out if you can manage.
 
W

wmkimmel

New member
Being consistent is key. I used to have a special toy and DVD they would watch. Reward with there favorite food and a sticker when there done.
However you get it done, get it done. Many a time I started on one end of the room and we ended up on the other side.
Do not forget that this disease is just as hard on the parents as it is on the child and learn some stress reducing techniques for yourself.
I found meditation to be very helpful and I would reward myself after a treatment was done as well. (Favorite cup of tea with honey etc.)
Remember that by being consistent the child will "Get used to it" and fight there treatments less and less.
Get them to spit the mucus out if you can manage.
 
W

wmkimmel

New member
Being consistent is key. I used to have a special toy and DVD they would watch. Reward with there favorite food and a sticker when there done.
However you get it done, get it done. Many a time I started on one end of the room and we ended up on the other side.
Do not forget that this disease is just as hard on the parents as it is on the child and learn some stress reducing techniques for yourself.
I found meditation to be very helpful and I would reward myself after a treatment was done as well. (Favorite cup of tea with honey etc.)
Remember that by being consistent the child will "Get used to it" and fight there treatments less and less.
Get them to spit the mucus out if you can manage.
 
C

cfangel03

Guest
I did it when she was sleeping. They get the most medicine that way because their breathing is perfect, and they are not moving around.
once at naptme, and once at bedtime.
today at 4 1/2 she asks for it because it puts her to sleep.
ps: She has never been sick - Thank God.
Leah Orr
 
C

cfangel03

Guest
I did it when she was sleeping. They get the most medicine that way because their breathing is perfect, and they are not moving around.
once at naptme, and once at bedtime.
today at 4 1/2 she asks for it because it puts her to sleep.
ps: She has never been sick - Thank God.
Leah Orr
 
C

cfangel03

Guest
I did it when she was sleeping. They get the most medicine that way because their breathing is perfect, and they are not moving around.
once at naptme, and once at bedtime.
today at 4 1/2 she asks for it because it puts her to sleep.
ps: She has never been sick - Thank God.
Leah Orr
 
C

cfangel03

Guest
I did it when she was sleeping. They get the most medicine that way because their breathing is perfect, and they are not moving around.
once at naptme, and once at bedtime.
today at 4 1/2 she asks for it because it puts her to sleep.
ps: She has never been sick - Thank God.
Leah Orr
 
C

cfangel03

Guest
I did it when she was sleeping. They get the most medicine that way because their breathing is perfect, and they are not moving around.
once at naptme, and once at bedtime.
today at 4 1/2 she asks for it because it puts her to sleep.
ps: She has never been sick - Thank God.
Leah Orr
 
O

OperaMama

New member
Francis says the Pulmosyme smells good-- go figure! You will be so relieved when you get the vest because you're not all worn out from the percussing-- especially if she's resistant! Vest time is our only TV or You Tube (!!!) time, so it's a good combo deal; if you already let the kids watch TV while you shower, cook, etc., it probably isn't so special to them. Francis also has no lung issues yet, but we do those treatments as though he did-- hang in there!

Mariannell, mother of Francis, 5 y/o, diagnosed one year ago, and Roz, 3 y/o not even a carrier
 
O

OperaMama

New member
Francis says the Pulmosyme smells good-- go figure! You will be so relieved when you get the vest because you're not all worn out from the percussing-- especially if she's resistant! Vest time is our only TV or You Tube (!!!) time, so it's a good combo deal; if you already let the kids watch TV while you shower, cook, etc., it probably isn't so special to them. Francis also has no lung issues yet, but we do those treatments as though he did-- hang in there!

Mariannell, mother of Francis, 5 y/o, diagnosed one year ago, and Roz, 3 y/o not even a carrier
 
O

OperaMama

New member
Francis says the Pulmosyme smells good-- go figure! You will be so relieved when you get the vest because you're not all worn out from the percussing-- especially if she's resistant! Vest time is our only TV or You Tube (!!!) time, so it's a good combo deal; if you already let the kids watch TV while you shower, cook, etc., it probably isn't so special to them. Francis also has no lung issues yet, but we do those treatments as though he did-- hang in there!

Mariannell, mother of Francis, 5 y/o, diagnosed one year ago, and Roz, 3 y/o not even a carrier
 
O

OperaMama

New member
Francis says the Pulmosyme smells good-- go figure! You will be so relieved when you get the vest because you're not all worn out from the percussing-- especially if she's resistant! Vest time is our only TV or You Tube (!!!) time, so it's a good combo deal; if you already let the kids watch TV while you shower, cook, etc., it probably isn't so special to them. Francis also has no lung issues yet, but we do those treatments as though he did-- hang in there!

Mariannell, mother of Francis, 5 y/o, diagnosed one year ago, and Roz, 3 y/o not even a carrier
 
O

OperaMama

New member
Francis says the Pulmosyme smells good-- go figure! You will be so relieved when you get the vest because you're not all worn out from the percussing-- especially if she's resistant! Vest time is our only TV or You Tube (!!!) time, so it's a good combo deal; if you already let the kids watch TV while you shower, cook, etc., it probably isn't so special to them. Francis also has no lung issues yet, but we do those treatments as though he did-- hang in there!

Mariannell, mother of Francis, 5 y/o, diagnosed one year ago, and Roz, 3 y/o not even a carrier
 
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