So much to talk about!! YEA!
Firstly, thank you Daniel's Mom for telling your story. As I said in my comment, I think you are a great mom and a great cf mom role model for me. Thank you for always being there for me. And I hope you know that I am always here for you, just a phone call away:) I always enjoy our lil' get togethers. I look forward to our next one. Hopefully we can get all the cf moms in this area together. That would be a lot of fun. I can't wait!
To answer Susanna's question about Daniels weight, I don't know, Daniel's mom will have to tell you that one. But I'm pretty sure she didn't mean to say that Daniel was on the feeding tube for 2 or more years. I can't exactly remember how long he was on it, I think it was for like 6 months. She'll clarify that I'm sure.
To answer Auntie Steph's question about cross-contamination ... CF people carry bacterias in their lungs. When they cough, it becomes air-borne. Although WE don't catch that bacteria, other CF people can. And no CF person wants anymore bacteria in their lungs than what they already have. That's why it is very very important to keep CF people at least 5 feet away from other CF people (at least, I think that's what they say).
This is the reason why we are not taking Lil' Chris to the Great Strides Walk on Sunday. It is not worth the risk of him catching anymore bacterias. Yes, some CF people do go to the Walks. You will most likely meet some at the walk you are going to, but it will be hard to tell who has it and who doesn't for some.
When Daniel's mom and I were talking the other day, we were telling each other about new CF moms in our town. Although it will be nice for us to get together and share stories, on the other hand, it is kinda scary, b/c you never know if our kids might bump into each other and not know it. I just thank God that the researchers or whoever, realized this. I think it's only been known for about the last 8 or so years! Susanna could probably tell us.
When Lil' Chris was younger, I read a book about a girl who grew up with CF. It was kinda like a diary of what she was going through, hospitalization, double lung transplant, things that happened to her after the transplant, etc. She was actually born the same year I was, and I remember her saying how she had sooooo many CF friends, b/c she used to room with them in the hospital. I felt so bad, b/c she and the doctors at that time didn't know that it was making them all worse. The book was called "Breathing for a Living" by Laura Rothenburg. I was actually just telling the new CF mom that I met at work the other day about this book. I came across this book at our local library when Lil' Chris was first diagnosed. My husband and I went there looking for something to read about CF. This was the only adult CF book we could find. I couldn't put it down. You should check it out if you ever have the chance.
Feel free to ask anymore questions,
M
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5 years ago
3 comments:
Hi M, I'm only going to be able to make a few 'scattered' comments tonight, but the discussion has been so good that I don't want to drop my end of it:-)
As for Cross-contamination; Timothy would've been nearly 5 and a half now, and I know that even when he was diagnosed at birth, they had already done away with the CF support groups and mixed activities. Here's the big deal (I think:-)... as CF progresses some CFers can develop bacteria that becomes resistant to the antibiotics that we have to treat them with. That's when the lungs really begin to be scarred and the lung function really begins to drop. These bacteri never settle in a non-cf lung because our secretions are able to effectively move anything out that doesn't belong. On the other hand the thick mucus' in the CF lung make it difficult to get rid of those infections. The problem with mingling with other CFers gets really tough when someone may have one of these antibotic-resistant forms of bacteria and not even know it yet! Overall, they've decided it just the best rule to keep the 3-5 feet apart (or more).
All that said, I have 2 CF babies in the same home!! Janna's culture grew out psudomonas a week or two before Chloe was born! I was afraid that meant Chloe would get it from day 1. But apparently, different people respond somewhat differently even to the same bacteria, because Chloe (nearly 11 months) has not grown out psudomonas a single time!! Thank God. (And she's had cultures every 4-6 weeks) I do my best to keep Janna and Chloe from cross-contaminating each other. They don't use the same spoons, I don't dump their enzymes into the same bowl of babyfood, they don't share bottles, or sippy cups, I try to keep Janna out of Chloe's face especially if either has any kind of cough or runny nose... BUT they are sisters. And we are a family that is very verbal and demonstrative in our affection and love. So when mom and dad are hugging and kissing :) ...the kids are too:) Especially if there are ouchy's involved:) We do encourage Janna to hug Chloe from the side or back and to kiss her forehead or hair instead of lips or nose.
One more thing:) About the Great Strides walk ... at the one here they actually gave out colorful beaded necklaces to anyone who was there with CF. That way it was something pretty to wear, let other people know that here was someone that they are actually walking to help, and yet it also let CFers know who to keep those 3-5 feet from:) I really liked being able to know those things:)
Thanks to Daniel's mom for responding to my questions. The doctors have been talking about a G-tube for Janna that would stay in for YEARS to come! Her weight is still a little low compared to Daniel's (him at 34, her at 28; he'll be 3 in July, she'll be 3 in Oct; but she was also 11 lbs 7 oz at 7 months old!). We are still saying that we are going to wait until she is 3 to 3.5 years old to even seriously consider the G-tube again. I believe she's doing so much better than the first 18-22 months of her life...
We'll I've gone on and on again:) Please forgive me I'm sorry if it's a little difficult to follow.
Good night and God Bless you, Lil' Chris, and all those that love him. ~ Susanna
Wow...I would never have guessed that CFers should be cautious around other CFers. Very interesting! Thanks everyone for helping me understand that. M, I wrote down the name of the book you read, Breathing For a Living, I would like to find it, and read it as well. Thanks so much for this blog, it really helps me to understand a little better. I just don't have the time to spend on the CF website researching. So again, thanks for all the time put into this blog!
Love, hugs, & kisses
Steph,
I love what I get out of this blog too;) It's nice to know it helps others too.
I'm glad to hear you want to read Laura's book. I'd love to read more like it. I wish I could talk to Laura's mom on this blog;) Who knows, maybe some day I will=)
M
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