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Old 06-02-2010, 01:06 PM   #1
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Hi I am new here and wanted to say hello

I am new to the forum and wanted to give you a little info about myself.

I am a mother to twins (boys) who are now 14 yrs old. It was pretty rough at infancy and I would never want to turn the pages back, but I want to stop the book from going any further with this horrible disease. I wish they had a cure this very moment. We have been thru alot in our 14 yrs with only 1 hospitalization since 6 months old so I guess we are doing pretty good. However, weight is an issue and we have to do something about it now before its too late to keep complications at bay.

Have to go now, will continue later.

Kathy

 
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Old 06-02-2010, 04:18 PM   #2
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Re: Hi I am new here and wanted to say hello

Well first of all WELCOME BACK..as I think you said you were here before, if not WELCOME for the first time
a little about me.. Im 24.. I was dxd with CF at age 3 months old. Weight for me as always been an issue. Everyone says "you must be the runt of the family" hehe.. but quite honestly I eat enough to feed a family of four and nothing changes. I am getting married in July2010, and I am currently pregnant with twins who DO NOT have CF, but I do. It is a long road to take care of yourself. At 14, for me, was rebel age. Nobody around me took medication and nobody was like me, so I figured why I do have to do it. I hated the fact that medication and physio took up my whole life, but when I was down and out, I realized I cant forget, its with me forever, and I feel my best when I take care of myself.

If you need anything, questions, or anything, dont hesitate to ask. I am very insightful, and have been through it all. From 3 months to now, life is a rocky road and its about taking care of your childreneven though they may think they dont need it.
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Kerri
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Proud Mom of Triplets
Born October 10th 2010

 
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Old 06-02-2010, 05:39 PM   #3
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Re: Hi I am new here and wanted to say hello

Hi Luckydraw,

No this is my first time on this forum and thanks for the welcome. I was on another board and I lost my insight with the loss of some people I came to know very well and this set me back, mentally. I was hesistant to register because I don't want to get hurt again. I am crossing a bridge and thought others might be going or have gone thru the same thing. The weight thing, the doc wants to place a g-tube for night feedings, however, my insurance plan does not cover the cost of formula and I am quite bummed and I work in the healthcare industry.

I work a 7 day on and 7 day off schedule, so I am only going to be online when I am off or when I have nothing else to do in the evenings (which is not too often...lol). So this may make it feel as tho I am scarce. Bear with me tho I will be around.

You are 24....thats great you are pregnant with twins! how exciting!. Let us know how things go.

ta ta for now,
Kathy

 
Old 06-02-2010, 06:03 PM   #4
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Re: Hi I am new here and wanted to say hello

thats horrible for the insurance not to cover it. Do either of your sons take the inhalant PULMOZYME yet? I am not sure how affected there lungs are at 14, but I started inhaling this drug 3 yrs ago, and my secretions in my lungs havent changed for 3 yrs. My lung capacity has been at 73% for 3 yrs now. I highly recommend this drug, unless of course the symptoms of your boys are mild. This drug also decreases the amount of lung infections. I found I had more when I started my career. Being in a work environment exposed to others colds, and coughs. I hope they are doing ok? Is it that they dont eat enough, or they do, but the weight gain just does not happen?
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Old 06-10-2010, 05:28 AM   #5
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Re: Hi I am new here and wanted to say hello

My boys are on hypertonic saline right now. One of my boys had to take Tobi for a course and it cleared him up. I just feel that he had a issue when he burned his leg.

They are doing okay other than underweight. Mild to almost normal lung functions.

Since I work in the medical field, I tend to be more aggressive because I have two on my hands....lol.

Gotta get to work now, will talk soon.

Kathy
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My personal quote: If there was a cure for CF this very "moment" and this very "moment" is not soon enough, you'd hear this twins mom "Across America" "YESSSSSSSSSSSSSSSSS"!!!!!!!.

 
Old 04-05-2011, 11:47 AM   #6
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Re: Hi I am new here and wanted to say hello

Hi there I am new to this disease as well. I have known since I was 18 weeks pregnant that my son was going to have CF. I cannot imagine having two babies with this disease. Any words of encouragement would be helpful. My son is two months old and all I do is cry when I hold him. I feel like a bad mother for doing this to him. Any words of wisdom you can give me would be helpful. Thanks

 
Old 04-06-2011, 08:14 AM   #7
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Re: Hi I am new here and wanted to say hello

Quote:
Originally Posted by hopefulbabe View Post
Hi there I am new to this disease as well. I have known since I was 18 weeks pregnant that my son was going to have CF. I cannot imagine having two babies with this disease. Any words of encouragement would be helpful. My son is two months old and all I do is cry when I hold him. I feel like a bad mother for doing this to him. Any words of wisdom you can give me would be helpful. Thanks
DS was diagnosed shortly after he was born. Was a huge shock, we went thru a full range of emotions -- similar to a grieving process -- anger, disbelief... You have to remember that your son is a normal baby who just happens to require some extra care to keep him healthy and happy. You'll get into a routine and not be so overwhelmed with treatments and the what ifs. Just take things step by step and remember to ENJOY your little boy and NORMAL baby milestones.

DS got off to a rough start, but today he's an active 1st grader who loves playing outside, is active in various sports.... I still get worried when he's feeling a little off or prior to a doctor's appointment. But he's a very happy little guy who makes us laugh!

 
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