New to your family, finally telling my story

C

CamdensMommy

New member
Hi everyone my name is Brook and I have a 4 month old baby boy w/cf (double deltaf508) Camden was diagnosed at two days old. Did you ever know that the best and worst day of your life could be the same day? Weird huh. We got the call on our way from bringing him home from the hospital. I delivered in okc 2 hours from where i live in a wee little town called Sayre (in oklahoma). We were twenty minutes from home and I didn't think anything could wipe the smiles off me and my husband's face...boy was I wrong. Looking back I wish she would have waited one day to call so I wouldn't remember his first day home like that..plus we had about fifty family members waiting on us at our house and I had cried so hard the rest of the way home that my eyes were almost swollen shut. After his first appt at the cf clinic I quit my pity party. It was in the children's hospital at ou medical and on the way to cf room we passed the down syndrome, hiv-aids, deformities,spina bifida...all kinds of rooms and i looked into everyone of them and saw the kids in the waiting room then looked down at the most precious baby boy in the world and realized how much worse it could be, no one would even know he had this disease if we didn't tell them! I didn't cry after that day for a very long time..needless to say it put it all into perspective for me. I knew when i was 4 mths pregnant that my husband and I were carriers so I researched all i could about it and i'm glad i did! We opted not to have an amnio due to the risk of miscarriage and we knew we were keeping him no matter what. I can't imagine my life w/o him he is such a blessing and i thank God everyday for him. He is doing great he is on creon 5, prevacid and vitamax. He weighs 12 lbs, he only weighed 5 when he was born so he is doing good. He doesn't mind his meds but absolutely hates the chest therapy lol but what 4 month old wiggle-worm would like it <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so glad i found this site it has helped me a lot!




Brook-mom to 4 mth old w/cf ddf508
 
C

CamdensMommy

New member
Hi everyone my name is Brook and I have a 4 month old baby boy w/cf (double deltaf508) Camden was diagnosed at two days old. Did you ever know that the best and worst day of your life could be the same day? Weird huh. We got the call on our way from bringing him home from the hospital. I delivered in okc 2 hours from where i live in a wee little town called Sayre (in oklahoma). We were twenty minutes from home and I didn't think anything could wipe the smiles off me and my husband's face...boy was I wrong. Looking back I wish she would have waited one day to call so I wouldn't remember his first day home like that..plus we had about fifty family members waiting on us at our house and I had cried so hard the rest of the way home that my eyes were almost swollen shut. After his first appt at the cf clinic I quit my pity party. It was in the children's hospital at ou medical and on the way to cf room we passed the down syndrome, hiv-aids, deformities,spina bifida...all kinds of rooms and i looked into everyone of them and saw the kids in the waiting room then looked down at the most precious baby boy in the world and realized how much worse it could be, no one would even know he had this disease if we didn't tell them! I didn't cry after that day for a very long time..needless to say it put it all into perspective for me. I knew when i was 4 mths pregnant that my husband and I were carriers so I researched all i could about it and i'm glad i did! We opted not to have an amnio due to the risk of miscarriage and we knew we were keeping him no matter what. I can't imagine my life w/o him he is such a blessing and i thank God everyday for him. He is doing great he is on creon 5, prevacid and vitamax. He weighs 12 lbs, he only weighed 5 when he was born so he is doing good. He doesn't mind his meds but absolutely hates the chest therapy lol but what 4 month old wiggle-worm would like it <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so glad i found this site it has helped me a lot!




Brook-mom to 4 mth old w/cf ddf508
 
C

CamdensMommy

New member
Hi everyone my name is Brook and I have a 4 month old baby boy w/cf (double deltaf508) Camden was diagnosed at two days old. Did you ever know that the best and worst day of your life could be the same day? Weird huh. We got the call on our way from bringing him home from the hospital. I delivered in okc 2 hours from where i live in a wee little town called Sayre (in oklahoma). We were twenty minutes from home and I didn't think anything could wipe the smiles off me and my husband's face...boy was I wrong. Looking back I wish she would have waited one day to call so I wouldn't remember his first day home like that..plus we had about fifty family members waiting on us at our house and I had cried so hard the rest of the way home that my eyes were almost swollen shut. After his first appt at the cf clinic I quit my pity party. It was in the children's hospital at ou medical and on the way to cf room we passed the down syndrome, hiv-aids, deformities,spina bifida...all kinds of rooms and i looked into everyone of them and saw the kids in the waiting room then looked down at the most precious baby boy in the world and realized how much worse it could be, no one would even know he had this disease if we didn't tell them! I didn't cry after that day for a very long time..needless to say it put it all into perspective for me. I knew when i was 4 mths pregnant that my husband and I were carriers so I researched all i could about it and i'm glad i did! We opted not to have an amnio due to the risk of miscarriage and we knew we were keeping him no matter what. I can't imagine my life w/o him he is such a blessing and i thank God everyday for him. He is doing great he is on creon 5, prevacid and vitamax. He weighs 12 lbs, he only weighed 5 when he was born so he is doing good. He doesn't mind his meds but absolutely hates the chest therapy lol but what 4 month old wiggle-worm would like it <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so glad i found this site it has helped me a lot!




Brook-mom to 4 mth old w/cf ddf508
 
C

CamdensMommy

New member
Hi everyone my name is Brook and I have a 4 month old baby boy w/cf (double deltaf508) Camden was diagnosed at two days old. Did you ever know that the best and worst day of your life could be the same day? Weird huh. We got the call on our way from bringing him home from the hospital. I delivered in okc 2 hours from where i live in a wee little town called Sayre (in oklahoma). We were twenty minutes from home and I didn't think anything could wipe the smiles off me and my husband's face...boy was I wrong. Looking back I wish she would have waited one day to call so I wouldn't remember his first day home like that..plus we had about fifty family members waiting on us at our house and I had cried so hard the rest of the way home that my eyes were almost swollen shut. After his first appt at the cf clinic I quit my pity party. It was in the children's hospital at ou medical and on the way to cf room we passed the down syndrome, hiv-aids, deformities,spina bifida...all kinds of rooms and i looked into everyone of them and saw the kids in the waiting room then looked down at the most precious baby boy in the world and realized how much worse it could be, no one would even know he had this disease if we didn't tell them! I didn't cry after that day for a very long time..needless to say it put it all into perspective for me. I knew when i was 4 mths pregnant that my husband and I were carriers so I researched all i could about it and i'm glad i did! We opted not to have an amnio due to the risk of miscarriage and we knew we were keeping him no matter what. I can't imagine my life w/o him he is such a blessing and i thank God everyday for him. He is doing great he is on creon 5, prevacid and vitamax. He weighs 12 lbs, he only weighed 5 when he was born so he is doing good. He doesn't mind his meds but absolutely hates the chest therapy lol but what 4 month old wiggle-worm would like it <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so glad i found this site it has helped me a lot!




Brook-mom to 4 mth old w/cf ddf508
 
C

CamdensMommy

New member
Hi everyone my name is Brook and I have a 4 month old baby boy w/cf (double deltaf508) Camden was diagnosed at two days old. Did you ever know that the best and worst day of your life could be the same day? Weird huh. We got the call on our way from bringing him home from the hospital. I delivered in okc 2 hours from where i live in a wee little town called Sayre (in oklahoma). We were twenty minutes from home and I didn't think anything could wipe the smiles off me and my husband's face...boy was I wrong. Looking back I wish she would have waited one day to call so I wouldn't remember his first day home like that..plus we had about fifty family members waiting on us at our house and I had cried so hard the rest of the way home that my eyes were almost swollen shut. After his first appt at the cf clinic I quit my pity party. It was in the children's hospital at ou medical and on the way to cf room we passed the down syndrome, hiv-aids, deformities,spina bifida...all kinds of rooms and i looked into everyone of them and saw the kids in the waiting room then looked down at the most precious baby boy in the world and realized how much worse it could be, no one would even know he had this disease if we didn't tell them! I didn't cry after that day for a very long time..needless to say it put it all into perspective for me. I knew when i was 4 mths pregnant that my husband and I were carriers so I researched all i could about it and i'm glad i did! We opted not to have an amnio due to the risk of miscarriage and we knew we were keeping him no matter what. I can't imagine my life w/o him he is such a blessing and i thank God everyday for him. He is doing great he is on creon 5, prevacid and vitamax. He weighs 12 lbs, he only weighed 5 when he was born so he is doing good. He doesn't mind his meds but absolutely hates the chest therapy lol but what 4 month old wiggle-worm would like it <img src="i/expressions/face-icon-small-smile.gif" border="0"> I'm so glad i found this site it has helped me a lot!
<br />
<br />
<br />
<br />
<br />Brook-mom to 4 mth old w/cf ddf508
 
M

mbrandazzo

New member
Hi Brook,

Welcome to the family. Your story sounds very similar to mine. I have a 9 month old (double Df508 too) named Logan who is my heart and soul. Each time we go to his CF clinic at the Children's Hospital in Wisconsin, we pray for each of those families we pass by in the hallways. Being at a Children's Hospital so frequently really makes us realize how much people take for granted in our world.

Also, I want you to know that within the hour after Logan was diagnosed ( back in April), we were on the phone with my uncle who is a retired pulmonologist down in Houston. He told us that the research he has recently seen and the treatments that may someday be available make him believe there WILL be a CURE in Logan's and your son's lifetime. NOw, the CURE is not going to magically make CF go away, but it will be something that will allow our children to lead a more fulfilling, long, and hopefully happy life! That is a CURE to me!

I hope this message gives you some hope and thank you for sharing your story.
Megan - Mommy to Logan - 9 Months w/ CF
 
M

mbrandazzo

New member
Hi Brook,

Welcome to the family. Your story sounds very similar to mine. I have a 9 month old (double Df508 too) named Logan who is my heart and soul. Each time we go to his CF clinic at the Children's Hospital in Wisconsin, we pray for each of those families we pass by in the hallways. Being at a Children's Hospital so frequently really makes us realize how much people take for granted in our world.

Also, I want you to know that within the hour after Logan was diagnosed ( back in April), we were on the phone with my uncle who is a retired pulmonologist down in Houston. He told us that the research he has recently seen and the treatments that may someday be available make him believe there WILL be a CURE in Logan's and your son's lifetime. NOw, the CURE is not going to magically make CF go away, but it will be something that will allow our children to lead a more fulfilling, long, and hopefully happy life! That is a CURE to me!

I hope this message gives you some hope and thank you for sharing your story.
Megan - Mommy to Logan - 9 Months w/ CF
 
M

mbrandazzo

New member
Hi Brook,

Welcome to the family. Your story sounds very similar to mine. I have a 9 month old (double Df508 too) named Logan who is my heart and soul. Each time we go to his CF clinic at the Children's Hospital in Wisconsin, we pray for each of those families we pass by in the hallways. Being at a Children's Hospital so frequently really makes us realize how much people take for granted in our world.

Also, I want you to know that within the hour after Logan was diagnosed ( back in April), we were on the phone with my uncle who is a retired pulmonologist down in Houston. He told us that the research he has recently seen and the treatments that may someday be available make him believe there WILL be a CURE in Logan's and your son's lifetime. NOw, the CURE is not going to magically make CF go away, but it will be something that will allow our children to lead a more fulfilling, long, and hopefully happy life! That is a CURE to me!

I hope this message gives you some hope and thank you for sharing your story.
Megan - Mommy to Logan - 9 Months w/ CF
 
M

mbrandazzo

New member
Hi Brook,

Welcome to the family. Your story sounds very similar to mine. I have a 9 month old (double Df508 too) named Logan who is my heart and soul. Each time we go to his CF clinic at the Children's Hospital in Wisconsin, we pray for each of those families we pass by in the hallways. Being at a Children's Hospital so frequently really makes us realize how much people take for granted in our world.

Also, I want you to know that within the hour after Logan was diagnosed ( back in April), we were on the phone with my uncle who is a retired pulmonologist down in Houston. He told us that the research he has recently seen and the treatments that may someday be available make him believe there WILL be a CURE in Logan's and your son's lifetime. NOw, the CURE is not going to magically make CF go away, but it will be something that will allow our children to lead a more fulfilling, long, and hopefully happy life! That is a CURE to me!

I hope this message gives you some hope and thank you for sharing your story.
Megan - Mommy to Logan - 9 Months w/ CF
 
M

mbrandazzo

New member
Hi Brook,
<br />
<br />Welcome to the family. Your story sounds very similar to mine. I have a 9 month old (double Df508 too) named Logan who is my heart and soul. Each time we go to his CF clinic at the Children's Hospital in Wisconsin, we pray for each of those families we pass by in the hallways. Being at a Children's Hospital so frequently really makes us realize how much people take for granted in our world.
<br />
<br />Also, I want you to know that within the hour after Logan was diagnosed ( back in April), we were on the phone with my uncle who is a retired pulmonologist down in Houston. He told us that the research he has recently seen and the treatments that may someday be available make him believe there WILL be a CURE in Logan's and your son's lifetime. NOw, the CURE is not going to magically make CF go away, but it will be something that will allow our children to lead a more fulfilling, long, and hopefully happy life! That is a CURE to me!
<br />
<br />I hope this message gives you some hope and thank you for sharing your story.
<br />Megan - Mommy to Logan - 9 Months w/ CF
 
J

JazzysMom

New member
Its always a bitter/sweet time for me to welcome newcomers to our forum!

Bitter because you shouldnt have to deal with such an illness, BUT sweet because we are an elite group of people. There is something about a CF community that makes us ALL special!

HUGS
 
J

JazzysMom

New member
Its always a bitter/sweet time for me to welcome newcomers to our forum!

Bitter because you shouldnt have to deal with such an illness, BUT sweet because we are an elite group of people. There is something about a CF community that makes us ALL special!

HUGS
 
J

JazzysMom

New member
Its always a bitter/sweet time for me to welcome newcomers to our forum!

Bitter because you shouldnt have to deal with such an illness, BUT sweet because we are an elite group of people. There is something about a CF community that makes us ALL special!

HUGS
 
J

JazzysMom

New member
Its always a bitter/sweet time for me to welcome newcomers to our forum!

Bitter because you shouldnt have to deal with such an illness, BUT sweet because we are an elite group of people. There is something about a CF community that makes us ALL special!

HUGS
 
J

JazzysMom

New member
Its always a bitter/sweet time for me to welcome newcomers to our forum!
<br />
<br />Bitter because you shouldnt have to deal with such an illness, BUT sweet because we are an elite group of people. There is something about a CF community that makes us ALL special!
<br />
<br />HUGS
 
M

Mommafirst

Guest
Welcome Brook and congrats on your bundle of joy.

I'm two and a half years ahead of you on this journey and still I have sad days. Its awesome that you have developed such a healthy attitude about it all. Some days are better around here than others. We can go months and months and life is just normal, but then another CF reality will strike. But we have a great deal of hope and resignation to fight and do whatever we can to give our daughter the best tools to beat this disease.
 
M

Mommafirst

Guest
Welcome Brook and congrats on your bundle of joy.

I'm two and a half years ahead of you on this journey and still I have sad days. Its awesome that you have developed such a healthy attitude about it all. Some days are better around here than others. We can go months and months and life is just normal, but then another CF reality will strike. But we have a great deal of hope and resignation to fight and do whatever we can to give our daughter the best tools to beat this disease.
 
M

Mommafirst

Guest
Welcome Brook and congrats on your bundle of joy.

I'm two and a half years ahead of you on this journey and still I have sad days. Its awesome that you have developed such a healthy attitude about it all. Some days are better around here than others. We can go months and months and life is just normal, but then another CF reality will strike. But we have a great deal of hope and resignation to fight and do whatever we can to give our daughter the best tools to beat this disease.
 
M

Mommafirst

Guest
Welcome Brook and congrats on your bundle of joy.

I'm two and a half years ahead of you on this journey and still I have sad days. Its awesome that you have developed such a healthy attitude about it all. Some days are better around here than others. We can go months and months and life is just normal, but then another CF reality will strike. But we have a great deal of hope and resignation to fight and do whatever we can to give our daughter the best tools to beat this disease.
 
M

Mommafirst

Guest
Welcome Brook and congrats on your bundle of joy.
<br />
<br />I'm two and a half years ahead of you on this journey and still I have sad days. Its awesome that you have developed such a healthy attitude about it all. Some days are better around here than others. We can go months and months and life is just normal, but then another CF reality will strike. But we have a great deal of hope and resignation to fight and do whatever we can to give our daughter the best tools to beat this disease.
 
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