Book Recommendations for new CF Parent

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harrabell

New member
I am the mother of a 2 month old little girl who was diagnosed with CF at 3 weeks old. So far I have been trying to absorb as much information as I can, but I have found that the technical books I am reading aren't giving me a very real sense of what I can expect my daughter to experience over her lifetime. So....I have read a few autobiographical books to get a better idea of what hospital stays are like, what a daily routine is like, etc. The problem that I am finding is that they are too emotionally overwhelming for me at this point. When I tell my husband about what I am reading, he reminds me that many of these people were born 30+ years ago, and things are probably much different for children with CF now.
I am desperate to find some personal stories that can give me some realistic expectations without completely breaking my heart. Any suggestions?
I haven't yet read through any of the topics on the forum yet, so maybe that will help.
 
H

harrabell

New member
I am the mother of a 2 month old little girl who was diagnosed with CF at 3 weeks old. So far I have been trying to absorb as much information as I can, but I have found that the technical books I am reading aren't giving me a very real sense of what I can expect my daughter to experience over her lifetime. So....I have read a few autobiographical books to get a better idea of what hospital stays are like, what a daily routine is like, etc. The problem that I am finding is that they are too emotionally overwhelming for me at this point. When I tell my husband about what I am reading, he reminds me that many of these people were born 30+ years ago, and things are probably much different for children with CF now.
I am desperate to find some personal stories that can give me some realistic expectations without completely breaking my heart. Any suggestions?
I haven't yet read through any of the topics on the forum yet, so maybe that will help.
 
A

Aboveallislove

Super Moderator
What I found helpful was reading Love & Logic, Parenting a Chronically Ill Child. It is more of a parenting book, than a CF book, BUT one of the authors is a mother of two children with CF and they have lots of CF stories. I've probably read it 10 time, starting about the time ds was your precious girl's age because it helped me cope--it gave me hope that I can do this. I also found great sollace in reading of the medicines that are on the cusp of really changing what CF means and reading of the people whose children are taking Kalydeco and what those changes mean. If you aren't yet up on the drugs on the horizon, send me a PM and I can give you a quick primer--it really helped me. Mommy hugs.
 
A

Aboveallislove

Super Moderator
What I found helpful was reading Love & Logic, Parenting a Chronically Ill Child. It is more of a parenting book, than a CF book, BUT one of the authors is a mother of two children with CF and they have lots of CF stories. I've probably read it 10 time, starting about the time ds was your precious girl's age because it helped me cope--it gave me hope that I can do this. I also found great sollace in reading of the medicines that are on the cusp of really changing what CF means and reading of the people whose children are taking Kalydeco and what those changes mean. If you aren't yet up on the drugs on the horizon, send me a PM and I can give you a quick primer--it really helped me. Mommy hugs.
 
S

sdelorenzo

Guest
Welcome! I do not have a cf book in mind for you to read, but I highly
recommend "Child of Mine" by Ellyn Satter. Getting our cf children to eat well
is a huge issue. This book does a fantastic job of explaining a parents
roll I getting our kids to eat.
the Love and Logic book is great. I need to re-read it.
Enjoy you sweet baby!
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 3 and Paige, 1 both
without CF
 
S

sdelorenzo

Guest
Welcome! I do not have a cf book in mind for you to read, but I highly
recommend "Child of Mine" by Ellyn Satter. Getting our cf children to eat well
is a huge issue. This book does a fantastic job of explaining a parents
roll I getting our kids to eat.
the Love and Logic book is great. I need to re-read it.
Enjoy you sweet baby!
Sharon, mom of Sophia, 10 and Jack, 8 both with CF, Grant, 3 and Paige, 1 both
without CF
 
H

Havoc

New member
The current trend is away from books to online communities like this one. You'll probably find all the information you need here if you ask specific questions.
 
R

Ratatosk

Administrator
Staff member
Ditto on the Lisa Greene's Book, otherwise, I agree with Jonathan. Online sites like this, CFF Foundation site -- www.cff.org for info on new medications, brochures on enzymes and feeding, cpt, cross contamination issues and germ prevention....

Most books are so outdated.
 
H

Heather

Guest
I just purchased the book 'Cycstic Fibrosis: A Guide for Patient and Family'. It's a great resource. All of the genetics and medical issues are covered. It was published recently so the info is up to date. Very factual - non emotional.

My daughter is 8months. I've read all of the emotional stuff that has helped thicken my skin. This book, however, is great tool for explaining how to care for a person with CF.

www.amazon.com/Cystic-Fibrosis-Guide-Patient-Family/dp/1608317536/ref=sr_1_1?ie=UTF8&qid=1338314290&sr=8-1
 
K

Kristen

New member
I am not the parent of a child with CF, but I wanted to chime in that I love Child of Mine! It has been so helpful in feeding my fussy-eating daughter. I am happy to see people recommending it!
 
H

harrabell

New member
Thank you so much for the responses everyone. I have read the Orenstein book already and found it very informative. I am getting the others on Amazon right now. Reading your responses are bringing tears to my eyes. I have been feeling very alone in all of this. It is nice to know there is a place to come to for answers. Thank you.
 
M

Mommafirst

Guest
Hi Jessica,
I'd suggest staying away from the books for awhile. There will be time for those, but for now coming to places like this....or facebook groups....you can learn what you want to know without delving too deeply if you aren't ready.

I can tell you this much. . . I have a 6 year old daughter diagnosed with CF in infancy. She just finished kindergarten and lives a mostly normal life. She loves her two older brothers, she swims competitively, she is learning to read really well, plays soccer and she happens to also have CF. Her Cf has given us some difficult months, but it has also given us lots of normal months too. A lot of our days with CF include the preventative care stuff....about an hour a day of airway clearance and breathing treatments. . . unless she is sick and then we do a bit more. Its not all sunshine and lollipops, we've had about one hospital stay each year, and my daughter has difficulty gaining weight so she has a feeding tube. But all things considered, she is a normal, vibrant, intelligent little girl who is a joy to my life.

It will get easier as you get to know your little girl's personality and you WILL be able to look at her and not just see CF.
 
S

sweetninis

New member
Momafirst is right jessica things u can know from people who r in the same situation like u can't be found in books so stay in touch join face book group and learn from other people's experience of CF
 
P

Printer

Active member
Harrabell:

I don't know what the future holds for your little girl but I have CF. I'm 72 and we will celebrate our 50th Wedding Anniversary in September.

Good luck,
Bill
 
S

sweetninis

New member
What r u doing to remove thick mucus from child's lung.Has ur doctor suggested suctioning or some tablets plz share
 
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