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  #1  
April 19th, 2007, 09:48 PM
Canuckmomme's Avatar Member
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Hi fellow mormon mommies! I'm Aislynn from NS, Canada. I'm 17 and a proud single mommy to the love of my life- my beautiful baby girl named Charlotte who is 7 1/2 m/o. She's a remarkable little girl with "65 Roses" (Cystic Fibrosis). She amazes me every day. This board looks fantastic! I'm happy to have found this board and hope to get to know you all!

*Edited due to the fact that I live in a small town and want to play it safe by not giving out too much info a this is a public forum.
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  #2  
April 20th, 2007, 05:34 AM
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I am not quite a mommie, well it is actually long off, but welcome to the board. I am glad that you like it.
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  #3  
April 20th, 2007, 06:52 AM
Canuckmomme's Avatar Member
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I am not quite a mommie, well it is actually long off, but welcome to the board. I am glad that you like it.[/b]
Thank you! My friend is from Pocatello, ID (well Boise now- but Pocatello is her hometown I guess and she'll be moving back there soon)- and just started posting here as well! Best of luck TTC- sending lots and lots of baby dust your way!

*Edited due to spelling errors.
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  #4  
April 20th, 2007, 08:46 AM
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aislynn, i know you've given me a site before but where do you find all those blinkies?
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  #5  
April 20th, 2007, 09:03 AM
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welcome aislynn! i'm kelsie and a mother to 3 children. 2 girls and a boy. i don't know what i would ever do without them either! great to see new faces and i hope you like it here.
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  #6  
April 20th, 2007, 09:37 AM
oicyur's Avatar Mega Super Mommy
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Welcome Aislynn!!! I'm glad you found your way over to this board! I'm Betsy and I have a 1 year old girl (pictured below) and am 22 weeks pregnant right now with a boy. Isn't being a mom awesome?! Hard, but awesome.

My best friend growing up had CF, so when you said "65 roses" I knew exactly what you were talking about. Do you mind me asking how bad her case is? Do you have to do any treatments at this age? My friend, Sarah, was the brightest light in my life and so I feel an immediate kinship with anyone who I know has CF. You have a special angel with you right now.
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  #7  
April 20th, 2007, 10:36 AM
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Well Im talking to you on MSN right now, how cool someone lives an hour away from me! lol. Welcome to the forum!
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  #8  
April 20th, 2007, 04:26 PM
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Thanks ladies! Sara- I hope I catch you again sometime on MSN! Betsy thank you- it's so nice to meet yet another person who has lived so closely with the CF culture. Charlotte is one of the only 20% of people with CF diagnosed as early as she was (she diplayed Meconium Ileus (an intestinal blockage due to her 1st bm being too thick and sticky to pass b/c of the mucuous in her bowels) right after birth- so they did the sweat test at 24 hours old- the initial one came back positve so they did the 2nd and that confirmed it- she was diagnosed at 3 days old. Some provinces and states are starting to routinely test all new babies for CF which I think is SUCH a great thing- that hasn't gone into effect here though. However- being of the minority diagosed so soon after birth she does have a more severe form of the disease- we just came home yesterday from her 5th time landing in the hospital- she has daily therapy with a mask and with me clapping on her back and her chest to clear her lungs- she also takes medicine now for nasal inflammation. She's been on pancreatic enzymes from the start to help her digest her milk, cereal, fruit and veggies- and she's had such a great appetite from day one- and has grown suprisingly well due to the fact he was diagnosed and put on these treatents right away- it's not hard to worry about her weight- so i'm VERY greatful for that. She takes doses of vitamin and mineral supplements as well to help her growth- she's grown so beautifully in spite of CF! I become really sad when I think of the day we'll have to get "the vest". I pray every day that they'll discover a cure in my Charlotte's lifetime- I try to keep the mindset that with the advances they make every day that it IS possible. A lung transplant will probably be a possibility for Charlotte in the future- but at the same time I don't like to think about her little lungs becoming that damaged- and CF might also start to affect her kidneys. My little girl is just such a little fighter- and that really helps to keep me going- I know that heaveny father made her the strong little girl she is and willl always be watching over her. He did send me a special little angel.

And next month (May) is CF awarenes month- May will always be a month I'll hold close to my heart for sure! I certainy wasn't aware that I was a carrier and neither was Charlotte's biological father I know- heck- I didn't hardly even know what CF really was until my daughter arrived- but now CF has absorbed my whole life! I'm so excited about all the upcoming activities for the foundation next month to help my hope that Charlotte and other kids with CF live a full life!
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  #9  
April 20th, 2007, 08:06 PM
oicyur's Avatar Mega Super Mommy
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You have a wonderful outlook on things and a great attitude! That's wonderful, and so important! I'm so glad that you have the connection with the Lord that you do, for those times that you need the extra strength!
I didn't realize May was CF awareness month. What can a person do, besides just being aware? lol
Man, all of those things you mentioned like the enzymes, the therapy of the nebulizer and patting on the back... they bring back memories! I'm sure you're already aware of this, but be extra careful to steer clear of people who have colds! What is the vest thing you mentioned? I can't think of what that is.
My friend, Sarah, was diagnosed at birth too. She came out weighing 13 lbs and looked like a sumo wrestler. They pricked her skin and water came squirting out, and because she was born like that they knew to test her. Sure enough, she had a bad case too. The Dr's said she wouldn't live to see 3. She did. Then they said she wouldn't live to see 6. She did. They kept setting deadlines, and she kept shocking them. She died when she was 13 years old. Having her in my life forever changed it. She was just a bright beacon of hope and such a strong witness of the gospel. In her obituary it said that there wasn't a person she met that wasn't touched by her in some way. Keep up your attitude and I'm sure your daughter will be just like that.

Much love to you and your daughter!!
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  #10  
April 21st, 2007, 08:14 PM
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You have a wonderful outlook on things and a great attitude! That's wonderful, and so important! I'm so glad that you have the connection with the Lord that you do, for those times that you need the extra strength!
I didn't realize May was CF awareness month. What can a person do, besides just being aware? lol
Man, all of those things you mentioned like the enzymes, the therapy of the nebulizer and patting on the back... they bring back memories! I'm sure you're already aware of this, but be extra careful to steer clear of people who have colds! What is the vest thing you mentioned? I can't think of what that is.
My friend, Sarah, was diagnosed at birth too. She came out weighing 13 lbs and looked like a sumo wrestler. They pricked her skin and water came squirting out, and because she was born like that they knew to test her. Sure enough, she had a bad case too. The Dr's said she wouldn't live to see 3. She did. Then they said she wouldn't live to see 6. She did. They kept setting deadlines, and she kept shocking them. She died when she was 13 years old. Having her in my life forever changed it. She was just a bright beacon of hope and such a strong witness of the gospel. In her obituary it said that there wasn't a person she met that wasn't touched by her in some way. Keep up your attitude and I'm sure your daughter will be just like that.

Much love to you and your daughter!! [/b]
Thanks again Betsy! My little girl amazes everybody everyday. And not to worry- I am the queen mother of all germ freaks!! "The Vest" is an inflatable vest for airway clearance therapy- it hooks up to tubes on a generator. There's a "chest vest" and a "full vest." Both will become a part of her daily therapy when she gets a little bigger. You can go here if you want info! http://www.thevest.com/conditions/cf...sp?gs=patients

The life expectancy for people with CF has gone up so amazingly- now up to late 20's/early 30's- my daughter has a more severe form as I mentioned- and I pray every day that what will happen is that they'll discover a cure in her lifetime- but it at least comforts my heart somewhat to know that she'll almost definetely live to see adulthood. She's in the hearts of a lot of people as I'm sure was your friend. There's actually a great cause that you can take part in during awareness month! They hold great strides walks annually all over here in Canada and the US to raise money for research- here's the link from the foundation in the states for the walks being held in Utah- you're in Utah right? Feel free to sign up and walk for 65 roses! You can also form a group and participate together! Thanks so much for your encouragement and telling me about your amazing friend- I want my daughter to have every opportunity in life and she's just the brightest and so amazing.

http://www.cff.org/Great_Strides/fin...site/index.cfm
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  #11  
April 22nd, 2007, 09:59 AM
oicyur's Avatar Mega Super Mommy
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Hmm... that vest must be somewhat new. I've never heard of it before. Sounds like good stuff, though. That's so great that the life expectancy has gone up so much! Thank goodness for modern medical technologies!!!

Well, I don't know if i'll be able to participate in a CF walk, since I'll be about 7 months along. Maybe if it wasn't to long, and if I haven't gone into PTL by then (I have a history of pre term labor). But thanks for the info. If I'm able, I'll do it.

Well, once again, welcome to the group! We'll see you around!
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  #12  
April 22nd, 2007, 05:13 PM
Canuckmomme's Avatar Member
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I'm sorry! I didn't even think of the fact that you'd be so preggo by then!! Charlotte came at 36 weeks- I just suddenly went into labour- but she weighed 6 lbs./5 oz. and was 18 in. long and had no NICU time- we did have a longer than average hospital stay (4 days) due to her minor surgery to remove her bm blockage as well as her diagnosis though. I hope your pregnancy and delivery goes smoothly! I so appreciate your willingness to support the foundation though if you can! I'm happy I found this board.
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  #13  
April 22nd, 2007, 05:36 PM
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Let me know if theres ever anything around! Ill try to make the drive
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