diagnosed today

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Rebjane

Super Moderator
Sorry to hear your daughter has CF. It is never anything a parent wants to hear. Are you going to a CF clinic tomorrow? Do you have anyone to go with you? Sometimes it's good to have another person, as if you have a baby it's hard to listen to the doctor while your baby is squirming and nursing. If it is a CF appointment, they tend to be long as well. Please feel free to ask any questions; someone here likely has been through the same thing. My daughter has CF and is almost 8 years old; while having a CF child is stressful and time consuming I wouldn't trade my daughter for the world. She/we make the best of the situation.

Rebecca
 
R

Rebjane

Super Moderator
Sorry to hear your daughter has CF. It is never anything a parent wants to hear. Are you going to a CF clinic tomorrow? Do you have anyone to go with you? Sometimes it's good to have another person, as if you have a baby it's hard to listen to the doctor while your baby is squirming and nursing. If it is a CF appointment, they tend to be long as well. Please feel free to ask any questions; someone here likely has been through the same thing. My daughter has CF and is almost 8 years old; while having a CF child is stressful and time consuming I wouldn't trade my daughter for the world. She/we make the best of the situation.

Rebecca
 
R

Rebjane

Super Moderator
Sorry to hear your daughter has CF. It is never anything a parent wants to hear. Are you going to a CF clinic tomorrow? Do you have anyone to go with you? Sometimes it's good to have another person, as if you have a baby it's hard to listen to the doctor while your baby is squirming and nursing. If it is a CF appointment, they tend to be long as well. Please feel free to ask any questions; someone here likely has been through the same thing. My daughter has CF and is almost 8 years old; while having a CF child is stressful and time consuming I wouldn't trade my daughter for the world. She/we make the best of the situation.
<br />
<br />Rebecca
 
F

flwrchldkb

New member
We are going to the cf clinic tomorrow. They have prepared me for the fact that it will be long and we have a ton of family that is willing to go with us, so we won't be alone. Thank you so much for the support and I look forward to asking everyone tons of questions.
 
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flwrchldkb

New member
We are going to the cf clinic tomorrow. They have prepared me for the fact that it will be long and we have a ton of family that is willing to go with us, so we won't be alone. Thank you so much for the support and I look forward to asking everyone tons of questions.
 
F

flwrchldkb

New member
We are going to the cf clinic tomorrow. They have prepared me for the fact that it will be long and we have a ton of family that is willing to go with us, so we won't be alone. Thank you so much for the support and I look forward to asking everyone tons of questions.
 
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Ratatosk

Administrator
Staff member
DH and I always went together. Brought along a notebook with a list of questions, as well as to write down information regarding treatments, weight, height, medications. Also loaded down the diaper bag with extra diapers, blanket, toys, formula & bottled water to mix with because we pretty much 4-6 hours in the exam room while doctors, respiratory therapist, dietician, etc. came in and out.

We also brought along magazines and some snacks, coffee/water for ourselves to keep us occupied while waiting. Hand sanitizer/wipes are a good idea, too. Since it's cold and flu season after you touch elevator buttons, pens, doorknobs, you'll want to clean off your hands before touching baby.

So sorry about the diagnosis. Just take it one step at a time.
 
R

Ratatosk

Administrator
Staff member
DH and I always went together. Brought along a notebook with a list of questions, as well as to write down information regarding treatments, weight, height, medications. Also loaded down the diaper bag with extra diapers, blanket, toys, formula & bottled water to mix with because we pretty much 4-6 hours in the exam room while doctors, respiratory therapist, dietician, etc. came in and out.

We also brought along magazines and some snacks, coffee/water for ourselves to keep us occupied while waiting. Hand sanitizer/wipes are a good idea, too. Since it's cold and flu season after you touch elevator buttons, pens, doorknobs, you'll want to clean off your hands before touching baby.

So sorry about the diagnosis. Just take it one step at a time.
 
R

Ratatosk

Administrator
Staff member
DH and I always went together. Brought along a notebook with a list of questions, as well as to write down information regarding treatments, weight, height, medications. Also loaded down the diaper bag with extra diapers, blanket, toys, formula & bottled water to mix with because we pretty much 4-6 hours in the exam room while doctors, respiratory therapist, dietician, etc. came in and out.
<br />
<br />We also brought along magazines and some snacks, coffee/water for ourselves to keep us occupied while waiting. Hand sanitizer/wipes are a good idea, too. Since it's cold and flu season after you touch elevator buttons, pens, doorknobs, you'll want to clean off your hands before touching baby.
<br />
<br />So sorry about the diagnosis. Just take it one step at a time.
 
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flwrchldkb

New member
Thank you so much for the info. I knew that we were looking at 2-3 hours but I guess since this is so new to me, I don't think about constantly cleaning hands.
 
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flwrchldkb

New member
Thank you so much for the info. I knew that we were looking at 2-3 hours but I guess since this is so new to me, I don't think about constantly cleaning hands.
 
F

flwrchldkb

New member
Thank you so much for the info. I knew that we were looking at 2-3 hours but I guess since this is so new to me, I don't think about constantly cleaning hands.
 
A

AleksandraKaczynska

New member
Hi, My daughter was dx just a month after birth and we had our first appointment then.

I agree with Ratatosk and think maybe you should take some extra clothes for yourself - if your're breastfeedind - I had a problem with milk comming out and having Joanna by my breast all the time - to calm her (and myself)down.

Also think of dressing up your baby so that you don't have to undress her wholly everytime a doc wants to take a look at her or take blood samples.

The notebook is a good idea - I still use one - all phones, adresses, medicine and prescriptions - questions and answeres - I also tried to keep tract of times of feeding and what (when we started on other food then just my milk) and times of sleep. My doc wanted to know such things. I also ask for copies of all x-rays - to ceep at home just in case they get mistreated in the clinic.

If you're going with your husband - he'll want to hear everything also - so maybe ask someone more to come - I asked my mother - and she still is updated on everything since she helps me with Joanna - and she is still usually the one going with us to the clinic - but make sure it's someone who'll be a support to you.

So sorry to hear about the diagnosis.
Feel free to look up on our blog - just pictures to see <img src="i/expressions/face-icon-small-smile.gif" border="0">
<a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>
Clean hand - it's important - most germs are on doorhandles, bathroom sink - places where everyone else touches....

I know you have different standards - but everytime we are back from the clinic - we first wash our hands, go and take a bath and change all clothes - the dirty go stright into the washing machine. But our clinic is not higenic at all.

And don't give toys which are on spot to play with to you're baby - take your own which you can easily wash after...

Good luck
 
A

AleksandraKaczynska

New member
Hi, My daughter was dx just a month after birth and we had our first appointment then.

I agree with Ratatosk and think maybe you should take some extra clothes for yourself - if your're breastfeedind - I had a problem with milk comming out and having Joanna by my breast all the time - to calm her (and myself)down.

Also think of dressing up your baby so that you don't have to undress her wholly everytime a doc wants to take a look at her or take blood samples.

The notebook is a good idea - I still use one - all phones, adresses, medicine and prescriptions - questions and answeres - I also tried to keep tract of times of feeding and what (when we started on other food then just my milk) and times of sleep. My doc wanted to know such things. I also ask for copies of all x-rays - to ceep at home just in case they get mistreated in the clinic.

If you're going with your husband - he'll want to hear everything also - so maybe ask someone more to come - I asked my mother - and she still is updated on everything since she helps me with Joanna - and she is still usually the one going with us to the clinic - but make sure it's someone who'll be a support to you.

So sorry to hear about the diagnosis.
Feel free to look up on our blog - just pictures to see <img src="i/expressions/face-icon-small-smile.gif" border="0">
<a target=_blank class=ftalternatingbarlinklarge href="http://asik-ak.blogspot.com/
">http://asik-ak.blogspot.com/
</a>
Clean hand - it's important - most germs are on doorhandles, bathroom sink - places where everyone else touches....

I know you have different standards - but everytime we are back from the clinic - we first wash our hands, go and take a bath and change all clothes - the dirty go stright into the washing machine. But our clinic is not higenic at all.

And don't give toys which are on spot to play with to you're baby - take your own which you can easily wash after...

Good luck
 
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