5 out 8 children have now been tested

H

holmfamily1992

New member
This disease just blows my mind sometimes. My 9 year old who was diagnose first is also PI. BUT he is the one that only weighs 56 pounds.

I thought about starting a caring bridge page. Most of our phone calls we scheduling and insurance crap. I had to contact my older kids coaches because they wont be at the events scheduled for them next week. Geez I hate to do that to them but they understand. My older kids just want to get it over with so they can move on.

Its funny, I am normally not a hugger but right now I will take all I can get. We are blessed to have the children that we do and if CF is the least of our concerns that will be fine. I know there are couples out there that cant even have kids and my heart goes out to them. Our situation could be a lot worse.

Thanks, Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 
H

holmfamily1992

New member
This disease just blows my mind sometimes. My 9 year old who was diagnose first is also PI. BUT he is the one that only weighs 56 pounds.

I thought about starting a caring bridge page. Most of our phone calls we scheduling and insurance crap. I had to contact my older kids coaches because they wont be at the events scheduled for them next week. Geez I hate to do that to them but they understand. My older kids just want to get it over with so they can move on.

Its funny, I am normally not a hugger but right now I will take all I can get. We are blessed to have the children that we do and if CF is the least of our concerns that will be fine. I know there are couples out there that cant even have kids and my heart goes out to them. Our situation could be a lot worse.

Thanks, Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 
H

holmfamily1992

New member
This disease just blows my mind sometimes. My 9 year old who was diagnose first is also PI. BUT he is the one that only weighs 56 pounds.

I thought about starting a caring bridge page. Most of our phone calls we scheduling and insurance crap. I had to contact my older kids coaches because they wont be at the events scheduled for them next week. Geez I hate to do that to them but they understand. My older kids just want to get it over with so they can move on.

Its funny, I am normally not a hugger but right now I will take all I can get. We are blessed to have the children that we do and if CF is the least of our concerns that will be fine. I know there are couples out there that cant even have kids and my heart goes out to them. Our situation could be a lot worse.

Thanks, Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 
H

holmfamily1992

New member
This disease just blows my mind sometimes. My 9 year old who was diagnose first is also PI. BUT he is the one that only weighs 56 pounds.

I thought about starting a caring bridge page. Most of our phone calls we scheduling and insurance crap. I had to contact my older kids coaches because they wont be at the events scheduled for them next week. Geez I hate to do that to them but they understand. My older kids just want to get it over with so they can move on.

Its funny, I am normally not a hugger but right now I will take all I can get. We are blessed to have the children that we do and if CF is the least of our concerns that will be fine. I know there are couples out there that cant even have kids and my heart goes out to them. Our situation could be a lot worse.

Thanks, Tina

<img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 
H

holmfamily1992

New member
This disease just blows my mind sometimes. My 9 year old who was diagnose first is also PI. BUT he is the one that only weighs 56 pounds.
<br />
<br />I thought about starting a caring bridge page. Most of our phone calls we scheduling and insurance crap. I had to contact my older kids coaches because they wont be at the events scheduled for them next week. Geez I hate to do that to them but they understand. My older kids just want to get it over with so they can move on.
<br />
<br />Its funny, I am normally not a hugger but right now I will take all I can get. We are blessed to have the children that we do and if CF is the least of our concerns that will be fine. I know there are couples out there that cant even have kids and my heart goes out to them. Our situation could be a lot worse.
<br />
<br />Thanks, Tina
<br />
<br /><img src="http://i284.photobucket.com/albums/ll15/holmfamiy/family-1.jpg">
 
V

valigirl21

Guest
Re Dylan:They didn't try pediasure to suppliment his regular food. My son is still less than 5 %ile in weight, but has gone up from <2%ile with regular meals and a pediasure 3X a day. As for the rest... you know the saying " God doesn't give us more than we can handle, but (I say) sometimes he pushes it! SMILE and know that everyone here supports and (those that do) are praying for you.
 
V

valigirl21

Guest
Re Dylan:They didn't try pediasure to suppliment his regular food. My son is still less than 5 %ile in weight, but has gone up from <2%ile with regular meals and a pediasure 3X a day. As for the rest... you know the saying " God doesn't give us more than we can handle, but (I say) sometimes he pushes it! SMILE and know that everyone here supports and (those that do) are praying for you.
 
V

valigirl21

Guest
Re Dylan:They didn't try pediasure to suppliment his regular food. My son is still less than 5 %ile in weight, but has gone up from <2%ile with regular meals and a pediasure 3X a day. As for the rest... you know the saying " God doesn't give us more than we can handle, but (I say) sometimes he pushes it! SMILE and know that everyone here supports and (those that do) are praying for you.
 
V

valigirl21

Guest
Re Dylan:They didn't try pediasure to suppliment his regular food. My son is still less than 5 %ile in weight, but has gone up from <2%ile with regular meals and a pediasure 3X a day. As for the rest... you know the saying " God doesn't give us more than we can handle, but (I say) sometimes he pushes it! SMILE and know that everyone here supports and (those that do) are praying for you.
 
V

valigirl21

Guest
Re Dylan:They didn't try pediasure to suppliment his regular food. My son is still less than 5 %ile in weight, but has gone up from <2%ile with regular meals and a pediasure 3X a day. As for the rest... you know the saying " God doesn't give us more than we can handle, but (I say) sometimes he pushes it! SMILE and know that everyone here supports and (those that do) are praying for you.
 
C

clawson5104

New member
WOW.....I donno where to start. GOD BLESS YOU for those 8 kids....thought my 4 were mindblowing......and now you have CF running around too.
My Wade has R117H....and a variant. He was diagnosed "atypical" genetic counselor said....don't worry,,,he'll probably only have fertility issues when he's older ....if anything. Lung/sinus problems should be from allergies/asthma. Well, now he is "treated" has a full blown CFer. He is pancreatic sufficient....according to tests......but he is seriously underweight. BMI is only 14%. He is 27 1/2 lbs and just turned 3. He hasn't gained weight since April. Kid won't eat. Hates milk,,,,milkshakes, pediasure....but I do add Scandical to everything coming and going. He LOVES lunchmeats.....hard to put on that. I've been threatened with the feeding tube issue too. But, donno.

All that said...from the families I have met here....every CFer is different....regardless of mutations....yeah there's some things they have in common. There is one woman here that has 2 daughters w/ CF...same mutations....one is fairly healthy ...the other 2 lung transplants. Unfortunately .....there isn't a crystal ball.....just a day by day plan to be thankful. And I'm with you....if CF is what I'm dealt with my kids.....THANK GOD.....better than cancer.

Sorry I rambled on. Wade has a CB page..... let us know if you do start one. I'll visit.

<span class="FTHighlightFont">www.caringbridge.org/visit/wadelawson</span ft>
 
C

clawson5104

New member
WOW.....I donno where to start. GOD BLESS YOU for those 8 kids....thought my 4 were mindblowing......and now you have CF running around too.
My Wade has R117H....and a variant. He was diagnosed "atypical" genetic counselor said....don't worry,,,he'll probably only have fertility issues when he's older ....if anything. Lung/sinus problems should be from allergies/asthma. Well, now he is "treated" has a full blown CFer. He is pancreatic sufficient....according to tests......but he is seriously underweight. BMI is only 14%. He is 27 1/2 lbs and just turned 3. He hasn't gained weight since April. Kid won't eat. Hates milk,,,,milkshakes, pediasure....but I do add Scandical to everything coming and going. He LOVES lunchmeats.....hard to put on that. I've been threatened with the feeding tube issue too. But, donno.

All that said...from the families I have met here....every CFer is different....regardless of mutations....yeah there's some things they have in common. There is one woman here that has 2 daughters w/ CF...same mutations....one is fairly healthy ...the other 2 lung transplants. Unfortunately .....there isn't a crystal ball.....just a day by day plan to be thankful. And I'm with you....if CF is what I'm dealt with my kids.....THANK GOD.....better than cancer.

Sorry I rambled on. Wade has a CB page..... let us know if you do start one. I'll visit.

<span class="FTHighlightFont">www.caringbridge.org/visit/wadelawson</span ft>
 
C

clawson5104

New member
WOW.....I donno where to start. GOD BLESS YOU for those 8 kids....thought my 4 were mindblowing......and now you have CF running around too.
My Wade has R117H....and a variant. He was diagnosed "atypical" genetic counselor said....don't worry,,,he'll probably only have fertility issues when he's older ....if anything. Lung/sinus problems should be from allergies/asthma. Well, now he is "treated" has a full blown CFer. He is pancreatic sufficient....according to tests......but he is seriously underweight. BMI is only 14%. He is 27 1/2 lbs and just turned 3. He hasn't gained weight since April. Kid won't eat. Hates milk,,,,milkshakes, pediasure....but I do add Scandical to everything coming and going. He LOVES lunchmeats.....hard to put on that. I've been threatened with the feeding tube issue too. But, donno.

All that said...from the families I have met here....every CFer is different....regardless of mutations....yeah there's some things they have in common. There is one woman here that has 2 daughters w/ CF...same mutations....one is fairly healthy ...the other 2 lung transplants. Unfortunately .....there isn't a crystal ball.....just a day by day plan to be thankful. And I'm with you....if CF is what I'm dealt with my kids.....THANK GOD.....better than cancer.

Sorry I rambled on. Wade has a CB page..... let us know if you do start one. I'll visit.

<span class="FTHighlightFont">www.caringbridge.org/visit/wadelawson</span ft>
 
C

clawson5104

New member
WOW.....I donno where to start. GOD BLESS YOU for those 8 kids....thought my 4 were mindblowing......and now you have CF running around too.
My Wade has R117H....and a variant. He was diagnosed "atypical" genetic counselor said....don't worry,,,he'll probably only have fertility issues when he's older ....if anything. Lung/sinus problems should be from allergies/asthma. Well, now he is "treated" has a full blown CFer. He is pancreatic sufficient....according to tests......but he is seriously underweight. BMI is only 14%. He is 27 1/2 lbs and just turned 3. He hasn't gained weight since April. Kid won't eat. Hates milk,,,,milkshakes, pediasure....but I do add Scandical to everything coming and going. He LOVES lunchmeats.....hard to put on that. I've been threatened with the feeding tube issue too. But, donno.

All that said...from the families I have met here....every CFer is different....regardless of mutations....yeah there's some things they have in common. There is one woman here that has 2 daughters w/ CF...same mutations....one is fairly healthy ...the other 2 lung transplants. Unfortunately .....there isn't a crystal ball.....just a day by day plan to be thankful. And I'm with you....if CF is what I'm dealt with my kids.....THANK GOD.....better than cancer.

Sorry I rambled on. Wade has a CB page..... let us know if you do start one. I'll visit.

<span class="FTHighlightFont">www.caringbridge.org/visit/wadelawson</span ft>
 
C

clawson5104

New member
WOW.....I donno where to start. GOD BLESS YOU for those 8 kids....thought my 4 were mindblowing......and now you have CF running around too.
<br />My Wade has R117H....and a variant. He was diagnosed "atypical" genetic counselor said....don't worry,,,he'll probably only have fertility issues when he's older ....if anything. Lung/sinus problems should be from allergies/asthma. Well, now he is "treated" has a full blown CFer. He is pancreatic sufficient....according to tests......but he is seriously underweight. BMI is only 14%. He is 27 1/2 lbs and just turned 3. He hasn't gained weight since April. Kid won't eat. Hates milk,,,,milkshakes, pediasure....but I do add Scandical to everything coming and going. He LOVES lunchmeats.....hard to put on that. I've been threatened with the feeding tube issue too. But, donno.
<br />
<br />All that said...from the families I have met here....every CFer is different....regardless of mutations....yeah there's some things they have in common. There is one woman here that has 2 daughters w/ CF...same mutations....one is fairly healthy ...the other 2 lung transplants. Unfortunately .....there isn't a crystal ball.....just a day by day plan to be thankful. And I'm with you....if CF is what I'm dealt with my kids.....THANK GOD.....better than cancer.
<br />
<br />Sorry I rambled on. Wade has a CB page..... let us know if you do start one. I'll visit.
<br />
<br /><span class="FTHighlightFont">www.caringbridge.org/visit/wadelawson</span ft>
 
J

jennc0315

New member
I know alot of people have said it but once again WOW! I dont know what else to say. I am sorry this is happening to you and have been thinking about you since I started reading your posts. I've been wondering what was happening and not expecting/hoping to hear this news.

I think we may go to the same clinic. I'm also in Michigan and after reading some of your posts I see similarities to some of my experiences. I am glad to see the clinic is helping you with a place to stay and hopefully, they can find some food vouchers or something to help out with meals.

Please, hang in there!! You are in my thoughts and prayers!

Jenn
 
J

jennc0315

New member
I know alot of people have said it but once again WOW! I dont know what else to say. I am sorry this is happening to you and have been thinking about you since I started reading your posts. I've been wondering what was happening and not expecting/hoping to hear this news.

I think we may go to the same clinic. I'm also in Michigan and after reading some of your posts I see similarities to some of my experiences. I am glad to see the clinic is helping you with a place to stay and hopefully, they can find some food vouchers or something to help out with meals.

Please, hang in there!! You are in my thoughts and prayers!

Jenn
 
J

jennc0315

New member
I know alot of people have said it but once again WOW! I dont know what else to say. I am sorry this is happening to you and have been thinking about you since I started reading your posts. I've been wondering what was happening and not expecting/hoping to hear this news.

I think we may go to the same clinic. I'm also in Michigan and after reading some of your posts I see similarities to some of my experiences. I am glad to see the clinic is helping you with a place to stay and hopefully, they can find some food vouchers or something to help out with meals.

Please, hang in there!! You are in my thoughts and prayers!

Jenn
 
J

jennc0315

New member
I know alot of people have said it but once again WOW! I dont know what else to say. I am sorry this is happening to you and have been thinking about you since I started reading your posts. I've been wondering what was happening and not expecting/hoping to hear this news.

I think we may go to the same clinic. I'm also in Michigan and after reading some of your posts I see similarities to some of my experiences. I am glad to see the clinic is helping you with a place to stay and hopefully, they can find some food vouchers or something to help out with meals.

Please, hang in there!! You are in my thoughts and prayers!

Jenn
 
J

jennc0315

New member
I know alot of people have said it but once again WOW! I dont know what else to say. I am sorry this is happening to you and have been thinking about you since I started reading your posts. I've been wondering what was happening and not expecting/hoping to hear this news.
<br />
<br />I think we may go to the same clinic. I'm also in Michigan and after reading some of your posts I see similarities to some of my experiences. I am glad to see the clinic is helping you with a place to stay and hopefully, they can find some food vouchers or something to help out with meals.
<br />
<br />Please, hang in there!! You are in my thoughts and prayers!
<br />
<br />Jenn
 
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