I've been solo parenting my two daughters (and two healthy sons) since 1987. Daughters were tested for CF at Stanford's Children's Hospital in late 80's. One negative; other unable to met test criteria. <br><br>Neither daughter diagnosed CF, but both have excessive mucus production and progressive lung disease. Girls require year round antibiotics, breathing treatments with Albuterol and anti-inflammatory med, percussion therapy to name a few, and one has been oxygen dependent since age four. <br><br>The girls' lives have been spent avoiding infection, regimented dietary intake (require carbs and additional glucose), both suffer from adrenal gland failure and require cortisol med daily, ongoing doctor appointments and hospitalizations, weeks and months of missing school, and so much more.<br><br>Because their pulmonary specialist treats both girls in the same manner she treats her CF patients, I am hoping to connect with one, or more, parent whose life has been forever altered by the same debilitating medical challenges. <br><br>I, as primary caregiver, feel as if I've aged 20 years beyond my chronological age. My life, since the birth of my eldest daughter, has been dedicated to providing any and every thing humanly possible to give my girls the most healthiest life possible as well as the best quality life given their circumstances.<br><br>I hope to be able to share the challenges, obstacles, and heart tugging experiences with someone who can relate, unlike pretty much every person I've come in contact with over the decades. <br><br>ER visits, tenderness due to PT, dispensing antibiotics that taste horrible and their side effects, avoiding any person with a sniffle, sneeze, runny nose, cough, etc. family members included, my anxiety level rising with the onset of fall and/or return to school, concern about excessive exposure to X-rays, IV's, blood tests, and so on and so forth. <br><br>And, last but not least, both of my daughters are extremely small for their ages. My 26 y.o. stands 2' 8" and weighs 22 lbs.; 29 y.o. stands 3' 6" and weighs 42 lbs. The latter being an undiagnosed small stature... not primordial dwarfs as profiled on several recent programs.<br><br>I've not found any other parent who can relate to our unique situations. I can only hope that I can find understanding about the fears of devastating lung issues/breathing problems that frighten the bejeezus (putting it kindly) out of me.<br>
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Mom of 2 daughters wants to connect...
- Thread starter WeThree
- Start date
I've been solo parenting my two daughters (and two healthy sons) since 1987. Daughters were tested for CF at Stanford's Children's Hospital in late 80's. One negative; other unable to met test criteria. <br><br>Neither daughter diagnosed CF, but both have excessive mucus production and progressive lung disease. Girls require year round antibiotics, breathing treatments with Albuterol and anti-inflammatory med, percussion therapy to name a few, and one has been oxygen dependent since age four. <br><br>The girls' lives have been spent avoiding infection, regimented dietary intake (require carbs and additional glucose), both suffer from adrenal gland failure and require cortisol med daily, ongoing doctor appointments and hospitalizations, weeks and months of missing school, and so much more.<br><br>Because their pulmonary specialist treats both girls in the same manner she treats her CF patients, I am hoping to connect with one, or more, parent whose life has been forever altered by the same debilitating medical challenges. <br><br>I, as primary caregiver, feel as if I've aged 20 years beyond my chronological age. My life, since the birth of my eldest daughter, has been dedicated to providing any and every thing humanly possible to give my girls the most healthiest life possible as well as the best quality life given their circumstances.<br><br>I hope to be able to share the challenges, obstacles, and heart tugging experiences with someone who can relate, unlike pretty much every person I've come in contact with over the decades. <br><br>ER visits, tenderness due to PT, dispensing antibiotics that taste horrible and their side effects, avoiding any person with a sniffle, sneeze, runny nose, cough, etc. family members included, my anxiety level rising with the onset of fall and/or return to school, concern about excessive exposure to X-rays, IV's, blood tests, and so on and so forth. <br><br>And, last but not least, both of my daughters are extremely small for their ages. My 26 y.o. stands 2' 8" and weighs 22 lbs.; 29 y.o. stands 3' 6" and weighs 42 lbs. The latter being an undiagnosed small stature... not primordial dwarfs as profiled on several recent programs.<br><br>I've not found any other parent who can relate to our unique situations. I can only hope that I can find understanding about the fears of devastating lung issues/breathing problems that frighten the bejeezus (putting it kindly) out of me.<br>
I've been solo parenting my two daughters (and two healthy sons) since 1987. Daughters were tested for CF at Stanford's Children's Hospital in late 80's. One negative; other unable to met test criteria. <br><br>Neither daughter diagnosed CF, but both have excessive mucus production and progressive lung disease. Girls require year round antibiotics, breathing treatments with Albuterol and anti-inflammatory med, percussion therapy to name a few, and one has been oxygen dependent since age four. <br><br>The girls' lives have been spent avoiding infection, regimented dietary intake (require carbs and additional glucose), both suffer from adrenal gland failure and require cortisol med daily, ongoing doctor appointments and hospitalizations, weeks and months of missing school, and so much more.<br><br>Because their pulmonary specialist treats both girls in the same manner she treats her CF patients, I am hoping to connect with one, or more, parent whose life has been forever altered by the same debilitating medical challenges. <br><br>I, as primary caregiver, feel as if I've aged 20 years beyond my chronological age. My life, since the birth of my eldest daughter, has been dedicated to providing any and every thing humanly possible to give my girls the most healthiest life possible as well as the best quality life given their circumstances.<br><br>I hope to be able to share the challenges, obstacles, and heart tugging experiences with someone who can relate, unlike pretty much every person I've come in contact with over the decades. <br><br>ER visits, tenderness due to PT, dispensing antibiotics that taste horrible and their side effects, avoiding any person with a sniffle, sneeze, runny nose, cough, etc. family members included, my anxiety level rising with the onset of fall and/or return to school, concern about excessive exposure to X-rays, IV's, blood tests, and so on and so forth. <br><br>And, last but not least, both of my daughters are extremely small for their ages. My 26 y.o. stands 2' 8" and weighs 22 lbs.; 29 y.o. stands 3' 6" and weighs 42 lbs. The latter being an undiagnosed small stature... not primordial dwarfs as profiled on several recent programs.<br><br>I've not found any other parent who can relate to our unique situations. I can only hope that I can find understanding about the fears of devastating lung issues/breathing problems that frighten the bejeezus (putting it kindly) out of me.<br>
JennifersHope
New member
I was with you until the height thing. I have been sick my whole life, I have Addison's disease which is complete adrenal failure and take cortisol and florinef daily, I was diagnonosed with CF 10 years ago via several positive sweat tests, I have one known CF gene Df508 and another one Q1330e that has not be described yet. I had a negative Nasal PD and my doctor at the time undiagnosed me,
Since then I have been culturing some nasty bugs, requiring oxygen and some of the new doctors I am seeing are suspicious of Cf again...I am currently dealing with some of the major hospitals in the nation to get a proper diagnose and to get myself back on track.
It breaks my heart to read how much you sacrifice for your kids, I have to tell you,. I live independent of my parents. I own my own home however, now being on disability, I lean on them for some support financially to maintain my life.
The hardest thing for me ever is the emotional drain I am on them, my dad was just here visiting and was in tears.. it rips my heart out totally.
I hope you find some time for yourself as well, you are important too
Since then I have been culturing some nasty bugs, requiring oxygen and some of the new doctors I am seeing are suspicious of Cf again...I am currently dealing with some of the major hospitals in the nation to get a proper diagnose and to get myself back on track.
It breaks my heart to read how much you sacrifice for your kids, I have to tell you,. I live independent of my parents. I own my own home however, now being on disability, I lean on them for some support financially to maintain my life.
The hardest thing for me ever is the emotional drain I am on them, my dad was just here visiting and was in tears.. it rips my heart out totally.
I hope you find some time for yourself as well, you are important too
JennifersHope
New member
I was with you until the height thing. I have been sick my whole life, I have Addison's disease which is complete adrenal failure and take cortisol and florinef daily, I was diagnonosed with CF 10 years ago via several positive sweat tests, I have one known CF gene Df508 and another one Q1330e that has not be described yet. I had a negative Nasal PD and my doctor at the time undiagnosed me,
Since then I have been culturing some nasty bugs, requiring oxygen and some of the new doctors I am seeing are suspicious of Cf again...I am currently dealing with some of the major hospitals in the nation to get a proper diagnose and to get myself back on track.
It breaks my heart to read how much you sacrifice for your kids, I have to tell you,. I live independent of my parents. I own my own home however, now being on disability, I lean on them for some support financially to maintain my life.
The hardest thing for me ever is the emotional drain I am on them, my dad was just here visiting and was in tears.. it rips my heart out totally.
I hope you find some time for yourself as well, you are important too
Since then I have been culturing some nasty bugs, requiring oxygen and some of the new doctors I am seeing are suspicious of Cf again...I am currently dealing with some of the major hospitals in the nation to get a proper diagnose and to get myself back on track.
It breaks my heart to read how much you sacrifice for your kids, I have to tell you,. I live independent of my parents. I own my own home however, now being on disability, I lean on them for some support financially to maintain my life.
The hardest thing for me ever is the emotional drain I am on them, my dad was just here visiting and was in tears.. it rips my heart out totally.
I hope you find some time for yourself as well, you are important too
JennifersHope
New member
I was with you until the height thing. I have been sick my whole life, I have Addison's disease which is complete adrenal failure and take cortisol and florinef daily, I was diagnonosed with CF 10 years ago via several positive sweat tests, I have one known CF gene Df508 and another one Q1330e that has not be described yet. I had a negative Nasal PD and my doctor at the time undiagnosed me,
Since then I have been culturing some nasty bugs, requiring oxygen and some of the new doctors I am seeing are suspicious of Cf again...I am currently dealing with some of the major hospitals in the nation to get a proper diagnose and to get myself back on track.
It breaks my heart to read how much you sacrifice for your kids, I have to tell you,. I live independent of my parents. I own my own home however, now being on disability, I lean on them for some support financially to maintain my life.
The hardest thing for me ever is the emotional drain I am on them, my dad was just here visiting and was in tears.. it rips my heart out totally.
I hope you find some time for yourself as well, you are important too
Since then I have been culturing some nasty bugs, requiring oxygen and some of the new doctors I am seeing are suspicious of Cf again...I am currently dealing with some of the major hospitals in the nation to get a proper diagnose and to get myself back on track.
It breaks my heart to read how much you sacrifice for your kids, I have to tell you,. I live independent of my parents. I own my own home however, now being on disability, I lean on them for some support financially to maintain my life.
The hardest thing for me ever is the emotional drain I am on them, my dad was just here visiting and was in tears.. it rips my heart out totally.
I hope you find some time for yourself as well, you are important too
Thanks for your posts Printer and JennifersHope.<br><br>Printer ~ I will give our Genetics department a call after the holidays. I wasn't offered that route all those years ago. Thanks for the suggestion. <br><br>JennifersHope ~ both of my girls have Addison's Disease, too. One was diagnosed at age seven, the other about the one year later. Again, the same daughter who'd not been able to sweat sufficiently for the CF test was not an appropriate candidate for the gold standard test for AD. She was diagnosed positive based on symptoms and because sister was. <br><br>I hope I didn't add to your concern about your parents. Although it's been a tough road for me, it's been tenfold tougher for my daughters. As parents, we'd give anything to be able to substitute ourselves out for our daughter/son. I relish the times my girls are in good health and wish they'd last forever. <br><br>I'm happy to read that you, JennifersHope, are able to be on your own. I've not spoken or communicated with either a CF patient or caregiver, so learning you live independently puts a smile on my face. My girls are also on disability. It's not much, as you well know, but every little bit helps. <br><br>As I type, one of my daughters is listening to a Jonas CD (with headphones) across from me. Every so often she coughs that familiar cough, but she's beaming a smile at me completely unaware of what I'm typing. Oh, now she's onto Justin Bieber's new Christmas CD and she's singing! <br><br>I'm off to give both their combined Albuterol/Budesonide treatments and dispense their Cortef and Azithromycin (pretty yucky, I've been told). Hope to hear from you again JennifersHope. <br><br><br><br>
Thanks for your posts Printer and JennifersHope.<br><br>Printer ~ I will give our Genetics department a call after the holidays. I wasn't offered that route all those years ago. Thanks for the suggestion. <br><br>JennifersHope ~ both of my girls have Addison's Disease, too. One was diagnosed at age seven, the other about the one year later. Again, the same daughter who'd not been able to sweat sufficiently for the CF test was not an appropriate candidate for the gold standard test for AD. She was diagnosed positive based on symptoms and because sister was. <br><br>I hope I didn't add to your concern about your parents. Although it's been a tough road for me, it's been tenfold tougher for my daughters. As parents, we'd give anything to be able to substitute ourselves out for our daughter/son. I relish the times my girls are in good health and wish they'd last forever. <br><br>I'm happy to read that you, JennifersHope, are able to be on your own. I've not spoken or communicated with either a CF patient or caregiver, so learning you live independently puts a smile on my face. My girls are also on disability. It's not much, as you well know, but every little bit helps. <br><br>As I type, one of my daughters is listening to a Jonas CD (with headphones) across from me. Every so often she coughs that familiar cough, but she's beaming a smile at me completely unaware of what I'm typing. Oh, now she's onto Justin Bieber's new Christmas CD and she's singing! <br><br>I'm off to give both their combined Albuterol/Budesonide treatments and dispense their Cortef and Azithromycin (pretty yucky, I've been told). Hope to hear from you again JennifersHope. <br><br><br><br>
Thanks for your posts Printer and JennifersHope.<br><br>Printer ~ I will give our Genetics department a call after the holidays. I wasn't offered that route all those years ago. Thanks for the suggestion. <br><br>JennifersHope ~ both of my girls have Addison's Disease, too. One was diagnosed at age seven, the other about the one year later. Again, the same daughter who'd not been able to sweat sufficiently for the CF test was not an appropriate candidate for the gold standard test for AD. She was diagnosed positive based on symptoms and because sister was. <br><br>I hope I didn't add to your concern about your parents. Although it's been a tough road for me, it's been tenfold tougher for my daughters. As parents, we'd give anything to be able to substitute ourselves out for our daughter/son. I relish the times my girls are in good health and wish they'd last forever. <br><br>I'm happy to read that you, JennifersHope, are able to be on your own. I've not spoken or communicated with either a CF patient or caregiver, so learning you live independently puts a smile on my face. My girls are also on disability. It's not much, as you well know, but every little bit helps. <br><br>As I type, one of my daughters is listening to a Jonas CD (with headphones) across from me. Every so often she coughs that familiar cough, but she's beaming a smile at me completely unaware of what I'm typing. Oh, now she's onto Justin Bieber's new Christmas CD and she's singing! <br><br>I'm off to give both their combined Albuterol/Budesonide treatments and dispense their Cortef and Azithromycin (pretty yucky, I've been told). Hope to hear from you again JennifersHope. <br><br><br><br>