she gained 3lbs..yey!

[rubiesmom]

Hello everyone, first of all let me just say what a wonderful site this is and it can be so helpful. My 6yo Rubie was diagnosed with double delta f508 in early feb. It's been a while since I have posted, I just needed some time for it all to sink in. It's been tough for us but harder on our daughter. Right now shes on enzymes and she has gained 2lbs in a month 1/2..she's now 37lbs..yey! Before she was diagnosed she would poop right after she ate and never absorbed any of the nutients. Now with her enzymes she has skipped a day here and there and never goes right after her meals anymore. She used to eat everything in site and was always hungry. Now how wonderful it is to hear her say those two little words "i'm full". Shes going to be getting the Hill rom vest, we are just waiting for for our insurance company to get their butts in gear. Shes on her multi vitamin, albuteroll and on april 12th we'll be getting her pulmozyme with the nebulizer. All this is so overwhelming but from reading on this site I've realized that these meds work and you all are living proof. Yesterday was our second visit to our cf center in milwaukee, her doc wants to do a CT on Rubies sinusis because she always sounds nasally and gets stuffed up a lot. They think she may have sinisitus and her post nasal drip is draining on to her lungs. It just hurts that it took 6 years before we found out she had CF. What are the treatments for sinisitus and is it worse to have it when you have CF?
I wish you all well and hope you all have a Happy Easter.


Liz- mom to Rubie 6 w/cf

 

[rubiesmom]

Hello everyone, first of all let me just say what a wonderful site this is and it can be so helpful. My 6yo Rubie was diagnosed with double delta f508 in early feb. It's been a while since I have posted, I just needed some time for it all to sink in. It's been tough for us but harder on our daughter. Right now shes on enzymes and she has gained 2lbs in a month 1/2..she's now 37lbs..yey! Before she was diagnosed she would poop right after she ate and never absorbed any of the nutients. Now with her enzymes she has skipped a day here and there and never goes right after her meals anymore. She used to eat everything in site and was always hungry. Now how wonderful it is to hear her say those two little words "i'm full". Shes going to be getting the Hill rom vest, we are just waiting for for our insurance company to get their butts in gear. Shes on her multi vitamin, albuteroll and on april 12th we'll be getting her pulmozyme with the nebulizer. All this is so overwhelming but from reading on this site I've realized that these meds work and you all are living proof. Yesterday was our second visit to our cf center in milwaukee, her doc wants to do a CT on Rubies sinusis because she always sounds nasally and gets stuffed up a lot. They think she may have sinisitus and her post nasal drip is draining on to her lungs. It just hurts that it took 6 years before we found out she had CF. What are the treatments for sinisitus and is it worse to have it when you have CF?
I wish you all well and hope you all have a Happy Easter.


Liz- mom to Rubie 6 w/cf

 

[rubiesmom]

Hello everyone, first of all let me just say what a wonderful site this is and it can be so helpful. My 6yo Rubie was diagnosed with double delta f508 in early feb. It's been a while since I have posted, I just needed some time for it all to sink in. It's been tough for us but harder on our daughter. Right now shes on enzymes and she has gained 2lbs in a month 1/2..she's now 37lbs..yey! Before she was diagnosed she would poop right after she ate and never absorbed any of the nutients. Now with her enzymes she has skipped a day here and there and never goes right after her meals anymore. She used to eat everything in site and was always hungry. Now how wonderful it is to hear her say those two little words "i'm full". Shes going to be getting the Hill rom vest, we are just waiting for for our insurance company to get their butts in gear. Shes on her multi vitamin, albuteroll and on april 12th we'll be getting her pulmozyme with the nebulizer. All this is so overwhelming but from reading on this site I've realized that these meds work and you all are living proof. Yesterday was our second visit to our cf center in milwaukee, her doc wants to do a CT on Rubies sinusis because she always sounds nasally and gets stuffed up a lot. They think she may have sinisitus and her post nasal drip is draining on to her lungs. It just hurts that it took 6 years before we found out she had CF. What are the treatments for sinisitus and is it worse to have it when you have CF?
I wish you all well and hope you all have a Happy Easter.


Liz- mom to Rubie 6 w/cf

 

[JazzysMom]

FIrst of all HURRAY on the weight gain. The sinusisits is similiar to what takes place in the lungs. Things get clogged & certain bacterias can grow. It can be a problem if things drip into the lungs. Even people with lung tx need to be careful of things from the sinuses. The severity & treatment can vary just like other parts of CF. Good Luck!

 

[JazzysMom]

FIrst of all HURRAY on the weight gain. The sinusisits is similiar to what takes place in the lungs. Things get clogged & certain bacterias can grow. It can be a problem if things drip into the lungs. Even people with lung tx need to be careful of things from the sinuses. The severity & treatment can vary just like other parts of CF. Good Luck!

 

[JazzysMom]

FIrst of all HURRAY on the weight gain. The sinusisits is similiar to what takes place in the lungs. Things get clogged & certain bacterias can grow. It can be a problem if things drip into the lungs. Even people with lung tx need to be careful of things from the sinuses. The severity & treatment can vary just like other parts of CF. Good Luck!

 

[izemmom]

I am so glad to see your post! I had been wondering how things went at Children's. I hope you are having a good experience with the staff. I was on the phone with them a lot yesterday...probably while you were there! The weight gain is great!!!!! I think she'll do well with the nebulizer. It will take a while, but she'll adjust. There are some montages on here that show kids about her age using a nebulizer...maybe seeing them would help her feel comfortable with it? Keep us posted. I think of you often!

 

[izemmom]

I am so glad to see your post! I had been wondering how things went at Children's. I hope you are having a good experience with the staff. I was on the phone with them a lot yesterday...probably while you were there! The weight gain is great!!!!! I think she'll do well with the nebulizer. It will take a while, but she'll adjust. There are some montages on here that show kids about her age using a nebulizer...maybe seeing them would help her feel comfortable with it? Keep us posted. I think of you often!

 

[izemmom]

I am so glad to see your post! I had been wondering how things went at Children's. I hope you are having a good experience with the staff. I was on the phone with them a lot yesterday...probably while you were there! The weight gain is great!!!!! I think she'll do well with the nebulizer. It will take a while, but she'll adjust. There are some montages on here that show kids about her age using a nebulizer...maybe seeing them would help her feel comfortable with it? Keep us posted. I think of you often!

 

[kayleesgrandma]

What a great post! Congrats on the weight gain. It is a triumph! I hope she can keep up the good work! Happy Easter to <img src="i/expressions/face-icon-small-happy.gif" border="0">you too

 

[kayleesgrandma]

What a great post! Congrats on the weight gain. It is a triumph! I hope she can keep up the good work! Happy Easter to <img src="i/expressions/face-icon-small-happy.gif" border="0">you too

 

[kayleesgrandma]

What a great post! Congrats on the weight gain. It is a triumph! I hope she can keep up the good work! Happy Easter to <img src="i/expressions/face-icon-small-happy.gif" border="0">you too

 

[Samsmom]

so glad things are going well. It is a lot to take in at first, but soon it will be the norm for you. Hope you Easter is a happy one as well. Best wishes!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

so glad things are going well. It is a lot to take in at first, but soon it will be the norm for you. Hope you Easter is a happy one as well. Best wishes!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[Samsmom]

so glad things are going well. It is a lot to take in at first, but soon it will be the norm for you. Hope you Easter is a happy one as well. Best wishes!!!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[janddburke]

funny story about weight gain.
my 12 year old was hospitalized in November and lost some weight etc.
got another infection and let's just say it was a rough winter.
well, 2 weeks ago at her visit we saw that she gained 5 pounds since the previous appointment 3 months ago!
we were so pleased!
the doctor came into the room, checked her chart and said 'hhmm, could be her body getting ready for puberty!', saw the look on my face and said 'gee, I love to do that!'

just puts things into perspective, they are still kids with all the trials and tribulations kids go thru....even puberty!

 

[janddburke]

funny story about weight gain.
my 12 year old was hospitalized in November and lost some weight etc.
got another infection and let's just say it was a rough winter.
well, 2 weeks ago at her visit we saw that she gained 5 pounds since the previous appointment 3 months ago!
we were so pleased!
the doctor came into the room, checked her chart and said 'hhmm, could be her body getting ready for puberty!', saw the look on my face and said 'gee, I love to do that!'

just puts things into perspective, they are still kids with all the trials and tribulations kids go thru....even puberty!

 

[janddburke]

funny story about weight gain.
my 12 year old was hospitalized in November and lost some weight etc.
got another infection and let's just say it was a rough winter.
well, 2 weeks ago at her visit we saw that she gained 5 pounds since the previous appointment 3 months ago!
we were so pleased!
the doctor came into the room, checked her chart and said 'hhmm, could be her body getting ready for puberty!', saw the look on my face and said 'gee, I love to do that!'

just puts things into perspective, they are still kids with all the trials and tribulations kids go thru....even puberty!

 

[OperaMama]

My boy, who is almost 5 and was just diagnosed 7 months ago, also used to poop A LOT, like 4- 6x a day. HOORAY for enzymes: weight gain and one poop a day!!! Congrats on your (her) weight gain!!! Just like everyone says, the routine of maintenance and preventative treatment becomes routine. And even when you see how tough some CFers have it, they still hang in there and do their damnedest and get along with the business of living, dust, warts, lumps, and all. Welcome to the team!



Mariannell, mother of Francis (5 w/cf), and Roz (3, no CF)

 

[OperaMama]

My boy, who is almost 5 and was just diagnosed 7 months ago, also used to poop A LOT, like 4- 6x a day. HOORAY for enzymes: weight gain and one poop a day!!! Congrats on your (her) weight gain!!! Just like everyone says, the routine of maintenance and preventative treatment becomes routine. And even when you see how tough some CFers have it, they still hang in there and do their damnedest and get along with the business of living, dust, warts, lumps, and all. Welcome to the team!



Mariannell, mother of Francis (5 w/cf), and Roz (3, no CF)