Parents of Infants with CF

M

MargaritaChic

New member
Thank you all for responding. I am glad to hear everyone is doing quite well.

It sounds like weight is an issue for most of our children. I assume it will be something we struggle with throughout their lives. I have some extra baby weight still that I would love to be able to give to my daughter!!! If only that were possible. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I think it would be nice for all of us to checkin with one another occassionally to see how things are going. Maybe a reoccuring post on this board so everyone can update as to how things are going and what they are stuggling with. Would any of you be interested if I were to do that?

Lastly, My thoughts are with each of you and your families. Hugs!
 
M

MargaritaChic

New member
Thank you all for responding. I am glad to hear everyone is doing quite well.

It sounds like weight is an issue for most of our children. I assume it will be something we struggle with throughout their lives. I have some extra baby weight still that I would love to be able to give to my daughter!!! If only that were possible. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I think it would be nice for all of us to checkin with one another occassionally to see how things are going. Maybe a reoccuring post on this board so everyone can update as to how things are going and what they are stuggling with. Would any of you be interested if I were to do that?

Lastly, My thoughts are with each of you and your families. Hugs!
 
M

MargaritaChic

New member
Thank you all for responding. I am glad to hear everyone is doing quite well.

It sounds like weight is an issue for most of our children. I assume it will be something we struggle with throughout their lives. I have some extra baby weight still that I would love to be able to give to my daughter!!! If only that were possible. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I think it would be nice for all of us to checkin with one another occassionally to see how things are going. Maybe a reoccuring post on this board so everyone can update as to how things are going and what they are stuggling with. Would any of you be interested if I were to do that?

Lastly, My thoughts are with each of you and your families. Hugs!
 
M

MargaritaChic

New member
Thank you all for responding. I am glad to hear everyone is doing quite well.

It sounds like weight is an issue for most of our children. I assume it will be something we struggle with throughout their lives. I have some extra baby weight still that I would love to be able to give to my daughter!!! If only that were possible. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">

I think it would be nice for all of us to checkin with one another occassionally to see how things are going. Maybe a reoccuring post on this board so everyone can update as to how things are going and what they are stuggling with. Would any of you be interested if I were to do that?

Lastly, My thoughts are with each of you and your families. Hugs!
 
M

MargaritaChic

New member
Thank you all for responding. I am glad to hear everyone is doing quite well.
<br />
<br />It sounds like weight is an issue for most of our children. I assume it will be something we struggle with throughout their lives. I have some extra baby weight still that I would love to be able to give to my daughter!!! If only that were possible. <img src="i/expressions/face-icon-small-disgusted.gif" border="0">
<br />
<br />I think it would be nice for all of us to checkin with one another occassionally to see how things are going. Maybe a reoccuring post on this board so everyone can update as to how things are going and what they are stuggling with. Would any of you be interested if I were to do that?
<br />
<br />Lastly, My thoughts are with each of you and your families. Hugs!
<br />
<br />
 
M

Mommy2Alysa

New member
ust wondering how many of us there are on here. It would be nice to 'talk' with eat of you and sort of compare notes.

What is your child's name? Ashlynn KIANA Rae R....

Boy or Girl? Girl

How old is your child? just over 7 months

How is your child doing? she is growing and gaining well. They are just worried about her stomach as she has been trouble pooping. Being sent to a GI specialist.

What medications is your child on? Enzymes (1 before each bottle) and Adeks and they just started her on Renididyn because they think her body is waiting too long to digest her enzymes

What therapies is your child doing? Nothing just chest percussion when we burp her

Has your child hit any baby milestones? She is in the spinning stage of crawling and for the first time yesterday she pulled herself up on the laundry basket (uh oh... lol)
 
M

Mommy2Alysa

New member
ust wondering how many of us there are on here. It would be nice to 'talk' with eat of you and sort of compare notes.

What is your child's name? Ashlynn KIANA Rae R....

Boy or Girl? Girl

How old is your child? just over 7 months

How is your child doing? she is growing and gaining well. They are just worried about her stomach as she has been trouble pooping. Being sent to a GI specialist.

What medications is your child on? Enzymes (1 before each bottle) and Adeks and they just started her on Renididyn because they think her body is waiting too long to digest her enzymes

What therapies is your child doing? Nothing just chest percussion when we burp her

Has your child hit any baby milestones? She is in the spinning stage of crawling and for the first time yesterday she pulled herself up on the laundry basket (uh oh... lol)
 
M

Mommy2Alysa

New member
ust wondering how many of us there are on here. It would be nice to 'talk' with eat of you and sort of compare notes.

What is your child's name? Ashlynn KIANA Rae R....

Boy or Girl? Girl

How old is your child? just over 7 months

How is your child doing? she is growing and gaining well. They are just worried about her stomach as she has been trouble pooping. Being sent to a GI specialist.

What medications is your child on? Enzymes (1 before each bottle) and Adeks and they just started her on Renididyn because they think her body is waiting too long to digest her enzymes

What therapies is your child doing? Nothing just chest percussion when we burp her

Has your child hit any baby milestones? She is in the spinning stage of crawling and for the first time yesterday she pulled herself up on the laundry basket (uh oh... lol)
 
M

Mommy2Alysa

New member
ust wondering how many of us there are on here. It would be nice to 'talk' with eat of you and sort of compare notes.

What is your child's name? Ashlynn KIANA Rae R....

Boy or Girl? Girl

How old is your child? just over 7 months

How is your child doing? she is growing and gaining well. They are just worried about her stomach as she has been trouble pooping. Being sent to a GI specialist.

What medications is your child on? Enzymes (1 before each bottle) and Adeks and they just started her on Renididyn because they think her body is waiting too long to digest her enzymes

What therapies is your child doing? Nothing just chest percussion when we burp her

Has your child hit any baby milestones? She is in the spinning stage of crawling and for the first time yesterday she pulled herself up on the laundry basket (uh oh... lol)
 
M

Mommy2Alysa

New member
ust wondering how many of us there are on here. It would be nice to 'talk' with eat of you and sort of compare notes.
<br />
<br />What is your child's name? Ashlynn KIANA Rae R....
<br />
<br />Boy or Girl? Girl
<br />
<br />How old is your child? just over 7 months
<br />
<br />How is your child doing? she is growing and gaining well. They are just worried about her stomach as she has been trouble pooping. Being sent to a GI specialist.
<br />
<br />What medications is your child on? Enzymes (1 before each bottle) and Adeks and they just started her on Renididyn because they think her body is waiting too long to digest her enzymes
<br />
<br />What therapies is your child doing? Nothing just chest percussion when we burp her
<br />
<br />Has your child hit any baby milestones? She is in the spinning stage of crawling and for the first time yesterday she pulled herself up on the laundry basket (uh oh... lol)
 
M

Mom2Max

New member
What is your child's name?
Max

Boy or Girl?
Boy

How old is your child?
6 1/2 months (born 9/26/07)

How is your child doing?
He is doing really well (thankfully). He has had a few colds this winter, but they stayed mild. He also dropped from 50% in weight to 10%, but I've worked hard beefing up his calories (supplementing bf w/ formula - and he started solids a little early).

What medications is your child on?
1/8 tsp salt per day & adek's.

What therapies is your child doing?
So far only chest percussions once per day (10 - 15 min), however, I usually do it twice a day.

Has your child hit any baby milestones?
He has begun the backwards scoot (which freaks me out because soon he is going to be rubbing his hands/face into the carpet soon ... argh).

I'd like to add how thankful I am for this site! I believe that the diagnosis would have been more overwhelming (if that's possible), if I didn't have this resource.

Thanks everyone!
 
M

Mom2Max

New member
What is your child's name?
Max

Boy or Girl?
Boy

How old is your child?
6 1/2 months (born 9/26/07)

How is your child doing?
He is doing really well (thankfully). He has had a few colds this winter, but they stayed mild. He also dropped from 50% in weight to 10%, but I've worked hard beefing up his calories (supplementing bf w/ formula - and he started solids a little early).

What medications is your child on?
1/8 tsp salt per day & adek's.

What therapies is your child doing?
So far only chest percussions once per day (10 - 15 min), however, I usually do it twice a day.

Has your child hit any baby milestones?
He has begun the backwards scoot (which freaks me out because soon he is going to be rubbing his hands/face into the carpet soon ... argh).

I'd like to add how thankful I am for this site! I believe that the diagnosis would have been more overwhelming (if that's possible), if I didn't have this resource.

Thanks everyone!
 
M

Mom2Max

New member
What is your child's name?
Max

Boy or Girl?
Boy

How old is your child?
6 1/2 months (born 9/26/07)

How is your child doing?
He is doing really well (thankfully). He has had a few colds this winter, but they stayed mild. He also dropped from 50% in weight to 10%, but I've worked hard beefing up his calories (supplementing bf w/ formula - and he started solids a little early).

What medications is your child on?
1/8 tsp salt per day & adek's.

What therapies is your child doing?
So far only chest percussions once per day (10 - 15 min), however, I usually do it twice a day.

Has your child hit any baby milestones?
He has begun the backwards scoot (which freaks me out because soon he is going to be rubbing his hands/face into the carpet soon ... argh).

I'd like to add how thankful I am for this site! I believe that the diagnosis would have been more overwhelming (if that's possible), if I didn't have this resource.

Thanks everyone!
 
M

Mom2Max

New member
What is your child's name?
Max

Boy or Girl?
Boy

How old is your child?
6 1/2 months (born 9/26/07)

How is your child doing?
He is doing really well (thankfully). He has had a few colds this winter, but they stayed mild. He also dropped from 50% in weight to 10%, but I've worked hard beefing up his calories (supplementing bf w/ formula - and he started solids a little early).

What medications is your child on?
1/8 tsp salt per day & adek's.

What therapies is your child doing?
So far only chest percussions once per day (10 - 15 min), however, I usually do it twice a day.

Has your child hit any baby milestones?
He has begun the backwards scoot (which freaks me out because soon he is going to be rubbing his hands/face into the carpet soon ... argh).

I'd like to add how thankful I am for this site! I believe that the diagnosis would have been more overwhelming (if that's possible), if I didn't have this resource.

Thanks everyone!
 
M

Mom2Max

New member
What is your child's name?
<br />Max
<br />
<br />Boy or Girl?
<br />Boy
<br />
<br />How old is your child?
<br />6 1/2 months (born 9/26/07)
<br />
<br />How is your child doing?
<br />He is doing really well (thankfully). He has had a few colds this winter, but they stayed mild. He also dropped from 50% in weight to 10%, but I've worked hard beefing up his calories (supplementing bf w/ formula - and he started solids a little early).
<br />
<br />What medications is your child on?
<br />1/8 tsp salt per day & adek's.
<br />
<br />What therapies is your child doing?
<br />So far only chest percussions once per day (10 - 15 min), however, I usually do it twice a day.
<br />
<br />Has your child hit any baby milestones?
<br />He has begun the backwards scoot (which freaks me out because soon he is going to be rubbing his hands/face into the carpet soon ... argh).
<br />
<br />I'd like to add how thankful I am for this site! I believe that the diagnosis would have been more overwhelming (if that's possible), if I didn't have this resource.
<br />
<br />Thanks everyone!
 
K

kathiel

New member
What is your child's name? Samantha
Boy or Girl? Girl
How old is your child? Well she's not an infant she is 4 years old
How is your child doing? She is doing pretty good
What medications is your child on? Pulmozyme, Albuterol, Creon 10, Prevacid, Bactrim, Zithromax, AquaADEK
What therapies is your child doing? CPT, Feeding Tubes
Has your child hit any baby milestones? She finally hit all of them.
 
K

kathiel

New member
What is your child's name? Samantha
Boy or Girl? Girl
How old is your child? Well she's not an infant she is 4 years old
How is your child doing? She is doing pretty good
What medications is your child on? Pulmozyme, Albuterol, Creon 10, Prevacid, Bactrim, Zithromax, AquaADEK
What therapies is your child doing? CPT, Feeding Tubes
Has your child hit any baby milestones? She finally hit all of them.
 
K

kathiel

New member
What is your child's name? Samantha
Boy or Girl? Girl
How old is your child? Well she's not an infant she is 4 years old
How is your child doing? She is doing pretty good
What medications is your child on? Pulmozyme, Albuterol, Creon 10, Prevacid, Bactrim, Zithromax, AquaADEK
What therapies is your child doing? CPT, Feeding Tubes
Has your child hit any baby milestones? She finally hit all of them.
 
K

kathiel

New member
What is your child's name? Samantha
Boy or Girl? Girl
How old is your child? Well she's not an infant she is 4 years old
How is your child doing? She is doing pretty good
What medications is your child on? Pulmozyme, Albuterol, Creon 10, Prevacid, Bactrim, Zithromax, AquaADEK
What therapies is your child doing? CPT, Feeding Tubes
Has your child hit any baby milestones? She finally hit all of them.
 
K

kathiel

New member
What is your child's name? Samantha
<br />Boy or Girl? Girl
<br />How old is your child? Well she's not an infant she is 4 years old
<br />How is your child doing? She is doing pretty good
<br />What medications is your child on? Pulmozyme, Albuterol, Creon 10, Prevacid, Bactrim, Zithromax, AquaADEK
<br />What therapies is your child doing? CPT, Feeding Tubes
<br />Has your child hit any baby milestones? She finally hit all of them.
 
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