Still Coping ~ Haven't Posted in a While

L

lemonstolemonade

Guest
Hello everyone! It has been a while since I've darkened the door of the forum and for that I'm sorry.

Things have been plugging along. Our infant is 5 months old now and is doing very well. She still shows no signs or symptoms of CF. We're on the RSV shots once a month and I'm still at home with our bundle of joy.

She's had one horrible cold and was put on a nebulizer with Xenopene (sp) for a few weeks. Now that it has cleared up, we're just fighting an ear infection.

She's pancreatic sufficient. Gaining weight....AND length and big feet.


I just look at her and wonder if we didn't know the genetic diagnosis, we'd never know she had CF.

I've been having horribly conflicting emotions about it because she isn't symptomatic.

My project to get an expecting cf parents website together was even put on hold because of the conflicted emotions. BUT, I've restarted that project and will hopefully have it up and running ready for comments in the next few weeks. I'm ready.

I know the majority of you face CF everyday. I feel guilty coming to you saying that we're doing so well. I just chase a CF phantom and do my best to keep willing it away from my precious one and I constantly wait for my child to explode into symptomatic coughing and other CF troubles.

Thank you all for everything. You all have gotten me through more than you can possibly know.
 
L

lemonstolemonade

Guest
Hello everyone! It has been a while since I've darkened the door of the forum and for that I'm sorry.

Things have been plugging along. Our infant is 5 months old now and is doing very well. She still shows no signs or symptoms of CF. We're on the RSV shots once a month and I'm still at home with our bundle of joy.

She's had one horrible cold and was put on a nebulizer with Xenopene (sp) for a few weeks. Now that it has cleared up, we're just fighting an ear infection.

She's pancreatic sufficient. Gaining weight....AND length and big feet.


I just look at her and wonder if we didn't know the genetic diagnosis, we'd never know she had CF.

I've been having horribly conflicting emotions about it because she isn't symptomatic.

My project to get an expecting cf parents website together was even put on hold because of the conflicted emotions. BUT, I've restarted that project and will hopefully have it up and running ready for comments in the next few weeks. I'm ready.

I know the majority of you face CF everyday. I feel guilty coming to you saying that we're doing so well. I just chase a CF phantom and do my best to keep willing it away from my precious one and I constantly wait for my child to explode into symptomatic coughing and other CF troubles.

Thank you all for everything. You all have gotten me through more than you can possibly know.
 
L

lemonstolemonade

Guest
Hello everyone! It has been a while since I've darkened the door of the forum and for that I'm sorry.

Things have been plugging along. Our infant is 5 months old now and is doing very well. She still shows no signs or symptoms of CF. We're on the RSV shots once a month and I'm still at home with our bundle of joy.

She's had one horrible cold and was put on a nebulizer with Xenopene (sp) for a few weeks. Now that it has cleared up, we're just fighting an ear infection.

She's pancreatic sufficient. Gaining weight....AND length and big feet.


I just look at her and wonder if we didn't know the genetic diagnosis, we'd never know she had CF.

I've been having horribly conflicting emotions about it because she isn't symptomatic.

My project to get an expecting cf parents website together was even put on hold because of the conflicted emotions. BUT, I've restarted that project and will hopefully have it up and running ready for comments in the next few weeks. I'm ready.

I know the majority of you face CF everyday. I feel guilty coming to you saying that we're doing so well. I just chase a CF phantom and do my best to keep willing it away from my precious one and I constantly wait for my child to explode into symptomatic coughing and other CF troubles.

Thank you all for everything. You all have gotten me through more than you can possibly know.
 
K

ktsmom

New member
Oh Emily, I am THRILLED to hear that you guys are doing so well! I think we need to hear the good and the bad, so thank you for posting.

I can definitely relate to the sense of other-worldness about treating invisible symptoms. We're not symptomatic for lung issues, but we're still on nebs and the vest because she did culture PA her first culture (two clear cultures since, but still Pulmo and vest ever day, and Tobi 28 on/28 off).

I think part of my problem is still the newness of it all; I've used this before in another thread but I still have to say it - I am grieving, but for what? No one died and no one has '6 months to live'. My daughter is happy, healthy, and feels so much better now that her tummy problems are being treated. We don't have tubes, ports, hospital stays, any of that. But we still have CF. Everyday I walk the fine line between denial and recognizing the need for the treatment regimen.

I wish you well on your project; you are using your strength and experience in a positive way!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
Oh Emily, I am THRILLED to hear that you guys are doing so well! I think we need to hear the good and the bad, so thank you for posting.

I can definitely relate to the sense of other-worldness about treating invisible symptoms. We're not symptomatic for lung issues, but we're still on nebs and the vest because she did culture PA her first culture (two clear cultures since, but still Pulmo and vest ever day, and Tobi 28 on/28 off).

I think part of my problem is still the newness of it all; I've used this before in another thread but I still have to say it - I am grieving, but for what? No one died and no one has '6 months to live'. My daughter is happy, healthy, and feels so much better now that her tummy problems are being treated. We don't have tubes, ports, hospital stays, any of that. But we still have CF. Everyday I walk the fine line between denial and recognizing the need for the treatment regimen.

I wish you well on your project; you are using your strength and experience in a positive way!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
K

ktsmom

New member
Oh Emily, I am THRILLED to hear that you guys are doing so well! I think we need to hear the good and the bad, so thank you for posting.

I can definitely relate to the sense of other-worldness about treating invisible symptoms. We're not symptomatic for lung issues, but we're still on nebs and the vest because she did culture PA her first culture (two clear cultures since, but still Pulmo and vest ever day, and Tobi 28 on/28 off).

I think part of my problem is still the newness of it all; I've used this before in another thread but I still have to say it - I am grieving, but for what? No one died and no one has '6 months to live'. My daughter is happy, healthy, and feels so much better now that her tummy problems are being treated. We don't have tubes, ports, hospital stays, any of that. But we still have CF. Everyday I walk the fine line between denial and recognizing the need for the treatment regimen.

I wish you well on your project; you are using your strength and experience in a positive way!

Dana
Mom to Katy (3, cf) and Kyra (6, no cf)
 
L

lemonstolemonade

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i>
I think part of my problem is still the newness of it all; I've used this before in another thread but I still have to say it - I am grieving, but for what? No one died and no one has '6 months to live'. My daughter is happy, healthy, and feels so much better now that her tummy problems are being treated. We don't have tubes, ports, hospital stays, any of that. But we still have CF. Everyday I walk the fine line between denial and recognizing the need for the treatment regimen.
</end quote></div>

I know that is what I'm doing, but not quite so much any more. We just continue to be so blessed, and everyone says how healthy she is. It is easy to look at her and think, "what's up with this?" We are fortunate not to need a treatment regimine right now. We just keep her away from groups of kids (especially sickies) and are getting her the RSV shot each month.

Our 2 year old was struggling being at home all day...and frankly, I was struggling with her. I just couldn't keep her engaged and out of trouble...and when a 2 year old gets into mischif, it really isn't their fault...which made me more upset because I felt like I wasn't being a good mother to her. She's in play school now 1/2 days 5 days a week. It gives me a breather and gives me a chance to spend some alone time with my 5 mth old.

I've gone through the entire holiday season not thinking about CF. My sister was the one who gently reminded folks around Christmas and Thanksgiving to wash their hands and politely asked them not to hold her if they had been sick. I just didn't think about it becasue she's just been soooooo healthy. I'm sure that was all screaming denial. I'm in nazi germ mode now. : )

Ok enough babbling. My honey is cooking breakfast for me. Happy 32nd birthday to me! : )

Have a great day folks!
 
L

lemonstolemonade

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i>
I think part of my problem is still the newness of it all; I've used this before in another thread but I still have to say it - I am grieving, but for what? No one died and no one has '6 months to live'. My daughter is happy, healthy, and feels so much better now that her tummy problems are being treated. We don't have tubes, ports, hospital stays, any of that. But we still have CF. Everyday I walk the fine line between denial and recognizing the need for the treatment regimen.
</end quote></div>

I know that is what I'm doing, but not quite so much any more. We just continue to be so blessed, and everyone says how healthy she is. It is easy to look at her and think, "what's up with this?" We are fortunate not to need a treatment regimine right now. We just keep her away from groups of kids (especially sickies) and are getting her the RSV shot each month.

Our 2 year old was struggling being at home all day...and frankly, I was struggling with her. I just couldn't keep her engaged and out of trouble...and when a 2 year old gets into mischif, it really isn't their fault...which made me more upset because I felt like I wasn't being a good mother to her. She's in play school now 1/2 days 5 days a week. It gives me a breather and gives me a chance to spend some alone time with my 5 mth old.

I've gone through the entire holiday season not thinking about CF. My sister was the one who gently reminded folks around Christmas and Thanksgiving to wash their hands and politely asked them not to hold her if they had been sick. I just didn't think about it becasue she's just been soooooo healthy. I'm sure that was all screaming denial. I'm in nazi germ mode now. : )

Ok enough babbling. My honey is cooking breakfast for me. Happy 32nd birthday to me! : )

Have a great day folks!
 
L

lemonstolemonade

Guest
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>ktsmom</b></i>
I think part of my problem is still the newness of it all; I've used this before in another thread but I still have to say it - I am grieving, but for what? No one died and no one has '6 months to live'. My daughter is happy, healthy, and feels so much better now that her tummy problems are being treated. We don't have tubes, ports, hospital stays, any of that. But we still have CF. Everyday I walk the fine line between denial and recognizing the need for the treatment regimen.
</end quote></div>

I know that is what I'm doing, but not quite so much any more. We just continue to be so blessed, and everyone says how healthy she is. It is easy to look at her and think, "what's up with this?" We are fortunate not to need a treatment regimine right now. We just keep her away from groups of kids (especially sickies) and are getting her the RSV shot each month.

Our 2 year old was struggling being at home all day...and frankly, I was struggling with her. I just couldn't keep her engaged and out of trouble...and when a 2 year old gets into mischif, it really isn't their fault...which made me more upset because I felt like I wasn't being a good mother to her. She's in play school now 1/2 days 5 days a week. It gives me a breather and gives me a chance to spend some alone time with my 5 mth old.

I've gone through the entire holiday season not thinking about CF. My sister was the one who gently reminded folks around Christmas and Thanksgiving to wash their hands and politely asked them not to hold her if they had been sick. I just didn't think about it becasue she's just been soooooo healthy. I'm sure that was all screaming denial. I'm in nazi germ mode now. : )

Ok enough babbling. My honey is cooking breakfast for me. Happy 32nd birthday to me! : )

Have a great day folks!
 
R

Ratatosk

Administrator
Staff member
I was pretty much in denial when DS was diagnosed. Other than DS's bowel obstruction at birth and the need for enzymes, he didn't appear to have any other symptoms. Plus, despite the genetic testing results, he had a normal sweat test, so I kept thinking that maybe the doctors would be wrong, that they'll come back in few months, years and say -- whoops, we made a mistake. But look on the bright side, with 3-4 CPT treatments a day, he's got the healthiest lungs around. I'd wish that we hadn't found out right away, so we could've enjoyed normal baby things instead of meds, cpt, doctor's appointments, constant worry.... But we adjusted. And I met someone whose child wasn't diagnosed until she was a year and a half. CPT treatments -- a nightmare. Regaining weight, think the poor child has finally, finally started gaining weight and it near the 50th percentile...

It's an adjustment. All part of the grieving process. Early on, our doctor gave us some advice. We weren't allowed to dwell on CF for more than 15 minutes a day. Pretty much, enjoy my child and focus on the good things instead of feeling sorry for myself. Which I try to do. But I do have down days -- if DS has an off day, coughs a little (he rarely does), gets a runny nose, says his tummy hurts, then I start to worry. Worry about the future. The disease progression, going to kindergarten in a year and a half.... First time he cultured pseudo it brought the diagnosis into reality. First time he didn't have enzymes with breakfast -- reality again. New meds, new treatment -- I panic and feel overwhelmed. Just try to take it one step at a time.
 
R

Ratatosk

Administrator
Staff member
I was pretty much in denial when DS was diagnosed. Other than DS's bowel obstruction at birth and the need for enzymes, he didn't appear to have any other symptoms. Plus, despite the genetic testing results, he had a normal sweat test, so I kept thinking that maybe the doctors would be wrong, that they'll come back in few months, years and say -- whoops, we made a mistake. But look on the bright side, with 3-4 CPT treatments a day, he's got the healthiest lungs around. I'd wish that we hadn't found out right away, so we could've enjoyed normal baby things instead of meds, cpt, doctor's appointments, constant worry.... But we adjusted. And I met someone whose child wasn't diagnosed until she was a year and a half. CPT treatments -- a nightmare. Regaining weight, think the poor child has finally, finally started gaining weight and it near the 50th percentile...

It's an adjustment. All part of the grieving process. Early on, our doctor gave us some advice. We weren't allowed to dwell on CF for more than 15 minutes a day. Pretty much, enjoy my child and focus on the good things instead of feeling sorry for myself. Which I try to do. But I do have down days -- if DS has an off day, coughs a little (he rarely does), gets a runny nose, says his tummy hurts, then I start to worry. Worry about the future. The disease progression, going to kindergarten in a year and a half.... First time he cultured pseudo it brought the diagnosis into reality. First time he didn't have enzymes with breakfast -- reality again. New meds, new treatment -- I panic and feel overwhelmed. Just try to take it one step at a time.
 
R

Ratatosk

Administrator
Staff member
I was pretty much in denial when DS was diagnosed. Other than DS's bowel obstruction at birth and the need for enzymes, he didn't appear to have any other symptoms. Plus, despite the genetic testing results, he had a normal sweat test, so I kept thinking that maybe the doctors would be wrong, that they'll come back in few months, years and say -- whoops, we made a mistake. But look on the bright side, with 3-4 CPT treatments a day, he's got the healthiest lungs around. I'd wish that we hadn't found out right away, so we could've enjoyed normal baby things instead of meds, cpt, doctor's appointments, constant worry.... But we adjusted. And I met someone whose child wasn't diagnosed until she was a year and a half. CPT treatments -- a nightmare. Regaining weight, think the poor child has finally, finally started gaining weight and it near the 50th percentile...

It's an adjustment. All part of the grieving process. Early on, our doctor gave us some advice. We weren't allowed to dwell on CF for more than 15 minutes a day. Pretty much, enjoy my child and focus on the good things instead of feeling sorry for myself. Which I try to do. But I do have down days -- if DS has an off day, coughs a little (he rarely does), gets a runny nose, says his tummy hurts, then I start to worry. Worry about the future. The disease progression, going to kindergarten in a year and a half.... First time he cultured pseudo it brought the diagnosis into reality. First time he didn't have enzymes with breakfast -- reality again. New meds, new treatment -- I panic and feel overwhelmed. Just try to take it one step at a time.
 
M

Mommafirst

Guest
EMILY!!!! You are back!!! I'm so happy that she is doing well!! I can completely understand the chasing the CF phantom thing. Some days I don't know that I believe Alyssa's symptoms are necessarily CF at all -- but yet with the diagnosis it really doesn't matter. A cough, cold, nothing.... all gets treated with CF preventative care.

Alyssa is still pancreatic sufficient, but we are starting enzymes... one more reminder of that CF beast!!!

I hope Abby stays nice and healthy!!!!

Big hugs!!! The grief is no less real, just because she doesn't have symptoms. You still have to grieve for the loss of the facade of normalcy!!!!
 
M

Mommafirst

Guest
EMILY!!!! You are back!!! I'm so happy that she is doing well!! I can completely understand the chasing the CF phantom thing. Some days I don't know that I believe Alyssa's symptoms are necessarily CF at all -- but yet with the diagnosis it really doesn't matter. A cough, cold, nothing.... all gets treated with CF preventative care.

Alyssa is still pancreatic sufficient, but we are starting enzymes... one more reminder of that CF beast!!!

I hope Abby stays nice and healthy!!!!

Big hugs!!! The grief is no less real, just because she doesn't have symptoms. You still have to grieve for the loss of the facade of normalcy!!!!
 
M

Mommafirst

Guest
EMILY!!!! You are back!!! I'm so happy that she is doing well!! I can completely understand the chasing the CF phantom thing. Some days I don't know that I believe Alyssa's symptoms are necessarily CF at all -- but yet with the diagnosis it really doesn't matter. A cough, cold, nothing.... all gets treated with CF preventative care.

Alyssa is still pancreatic sufficient, but we are starting enzymes... one more reminder of that CF beast!!!

I hope Abby stays nice and healthy!!!!

Big hugs!!! The grief is no less real, just because she doesn't have symptoms. You still have to grieve for the loss of the facade of normalcy!!!!
 
C

cosmokramer

New member
I totally understand how you feel. My daughter is now 19 months old and we are still chasing that ghost. She too has no signs or symptoms. I also feel that the doctors are going to come back and say she is fine but I know that she does have CF. The genes don't lie. So I try to enjoy everyday, but in the back of my mind is always the thought of the day she might get sick. I just really try to be proactive. We are on our trial for the vest and we love it. I hope the insurance will cover it eventhough she is not sick right now. Not one person can read the future of what will happen, I try to stay positive and hopefull and love her more then words can say. I came to grips with things a few months after her diagonosis and thought that I can't worry about what might happen. I have to live for today.

Angie
daughter w/ CF 19 months
son no CF 6 years old
 
C

cosmokramer

New member
I totally understand how you feel. My daughter is now 19 months old and we are still chasing that ghost. She too has no signs or symptoms. I also feel that the doctors are going to come back and say she is fine but I know that she does have CF. The genes don't lie. So I try to enjoy everyday, but in the back of my mind is always the thought of the day she might get sick. I just really try to be proactive. We are on our trial for the vest and we love it. I hope the insurance will cover it eventhough she is not sick right now. Not one person can read the future of what will happen, I try to stay positive and hopefull and love her more then words can say. I came to grips with things a few months after her diagonosis and thought that I can't worry about what might happen. I have to live for today.

Angie
daughter w/ CF 19 months
son no CF 6 years old
 
C

cosmokramer

New member
I totally understand how you feel. My daughter is now 19 months old and we are still chasing that ghost. She too has no signs or symptoms. I also feel that the doctors are going to come back and say she is fine but I know that she does have CF. The genes don't lie. So I try to enjoy everyday, but in the back of my mind is always the thought of the day she might get sick. I just really try to be proactive. We are on our trial for the vest and we love it. I hope the insurance will cover it eventhough she is not sick right now. Not one person can read the future of what will happen, I try to stay positive and hopefull and love her more then words can say. I came to grips with things a few months after her diagonosis and thought that I can't worry about what might happen. I have to live for today.

Angie
daughter w/ CF 19 months
son no CF 6 years old
 
W

westonsmom

New member
Been there. Done that. I actually stopped giving him his enzymes at one point because his summer was going very well and he was gaining weight rapidly on the new formula. I had myself convinced that the sweat test was wrong. Then we ended up in the hospital and I confessed about stopping the enzymes and they warned me that by doing that I could cause an obstruction. Then a month later we got the genetic test results...I was devastated again!
I think for the purpose of your own mental health you have to live in some sort of denial. I have to believe that things will get better for Weston and that we will be the lucky ones that don't have any lung issues and the digestive issues will subside. I have to think this or else I would be in a state of depression every day of my life. Cf or not Cf Weston WILL live a full and long life. Good luck!
 
W

westonsmom

New member
Been there. Done that. I actually stopped giving him his enzymes at one point because his summer was going very well and he was gaining weight rapidly on the new formula. I had myself convinced that the sweat test was wrong. Then we ended up in the hospital and I confessed about stopping the enzymes and they warned me that by doing that I could cause an obstruction. Then a month later we got the genetic test results...I was devastated again!
I think for the purpose of your own mental health you have to live in some sort of denial. I have to believe that things will get better for Weston and that we will be the lucky ones that don't have any lung issues and the digestive issues will subside. I have to think this or else I would be in a state of depression every day of my life. Cf or not Cf Weston WILL live a full and long life. Good luck!
 
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