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PLEASE HELP ME :(
- Thread starter JENNIFERA
- Start date
Julie,
What a great idea! I was also just thinking that Jennifer could get a chance to see everyone's pictures on the thread Emily started. But isn't it locked? I hope you can somehow post on it.
Jennifer,
What a wonderful response you have received from everyone. This is a great forum with great people. With everyone's help I know that you can stay positive and enjoy the birth of your daughter. Take Care and Good Luck!
Maria (mother of three daughters, the youngest Samantha w/cf)
What a great idea! I was also just thinking that Jennifer could get a chance to see everyone's pictures on the thread Emily started. But isn't it locked? I hope you can somehow post on it.
Jennifer,
What a wonderful response you have received from everyone. This is a great forum with great people. With everyone's help I know that you can stay positive and enjoy the birth of your daughter. Take Care and Good Luck!
Maria (mother of three daughters, the youngest Samantha w/cf)
NoDayButToday
New member
Jennifer,
What a pretty name! Coincidentally, Alanna was one of the names in the running for me by my parents, but in the end, they went with Colleen (I'm called "Coll"). My mom and I still love that name, it just didn't flow with our last name.
One thing I didn't mention that somehow stands out in my mind that someone said to me awhile back was "You live with CF, you don't die from CF". I thought that was an interesting way to look at it. CF isn't the movie of my life, so to speak, but the commercial breaks between scenes.
You seem to be a very strong mom-to-be, and again, I'm so glad you found us here! <img src="i/expressions/heart.gif" border="0">
What a pretty name! Coincidentally, Alanna was one of the names in the running for me by my parents, but in the end, they went with Colleen (I'm called "Coll"). My mom and I still love that name, it just didn't flow with our last name.
One thing I didn't mention that somehow stands out in my mind that someone said to me awhile back was "You live with CF, you don't die from CF". I thought that was an interesting way to look at it. CF isn't the movie of my life, so to speak, but the commercial breaks between scenes.
You seem to be a very strong mom-to-be, and again, I'm so glad you found us here! <img src="i/expressions/heart.gif" border="0">
Hi Jennifer,
I don't have much to add to what everyone has said, but I can tell you that it is going to okay. My son was diagnosed at 18 months, and I can remember feeling like I was never going to have another happy moment. But as he grows my life is so full of giggles, hugs and FUN! Yes, it can be a challenge, but you can do it. We are never given more than we can handle, even though it feels like it right now. My heart is with you. Feel free to e-mail me for anything.
<img src="i/expressions/heart.gif" border="0">
Kelly
KellyBrancoli@sbcglobal.net
I don't have much to add to what everyone has said, but I can tell you that it is going to okay. My son was diagnosed at 18 months, and I can remember feeling like I was never going to have another happy moment. But as he grows my life is so full of giggles, hugs and FUN! Yes, it can be a challenge, but you can do it. We are never given more than we can handle, even though it feels like it right now. My heart is with you. Feel free to e-mail me for anything.
<img src="i/expressions/heart.gif" border="0">
Kelly
KellyBrancoli@sbcglobal.net
My son and I just left the hospital today with the diagnosis of having csv. But there are concerns he may have cf. We will be going to Medford to have the sweat test. He is 2 yrs and 8 mo. I am so scared! But I know that God is so much bigger than me. We were in the Hospital for 3 days. I came in the emergencie room because he had a productive cough with a fever that I could not control. The Drs. were not sure what was wrong execpt that his sats were low and he was going to be admitted. He was on oxygen for 2 1/2 days. Had wheezing in the lungs and other symptoms. So we are off to Medford for cf testing on Wednesay. I Starting reading up on cf and relized Chris has had simler symptoms for a year. I am a little scared but I know that the awsome God I serve will figure out the end result. He always does! I had my paster come and pray with us and soon after he did Christophers sats went up the next day to 96. Christopher is the light of my life. And so Is my little 4 yr old Katelyn. I have relized through this life there is a appointed time for us that only God knows. Through this time of trials for you put your faith and hope in Jesus and he will see you through. If you would like to chat please feel free to e-mail back.
Your friend in Christ, Teresa sun;
Your friend in Christ, Teresa sun;
Emily65Roses
New member
Just a sidenote... if Christopher is positive for CF, you should have Katelyn tested as well. Often some children have milder symptoms than others. So even if Katelyn doesn't seem like she has CF, she may. And if you start the correct meds now, she'll be in better condition later.
ScaredSpouses
New member
This is good to know, finding out that I'm pregnant and a carrier has made me a mess because the not knowing if my poor baby could have this disease is eating away at me. I hate seeing people, esp. children in pain. Hearing your stories and the hope in your words is making it easier to consider not seeing this as a death sentance. But I didn't know that testing should still be done after the 2nd year if your first child was never tested for it. I figured if it didn't show up the first year or two, your child wouldn't have it! I posted a question titled Scared Parents personal Info, If anyone else has anything else they think would be helpful, I'd appreciate it!!!
Jennifer,
Sorry for the delayed response. You asked earlier how we found out about my son's diagnosis. He'd had symptoms that I found to be strange from the time he was 3 months old. We brought these up to various pediatricians (eventually realizing they were cf symptoms: salty when we kissed him, lack of weight gain, continuous cough...) and it was finally a wonderful physician's assistant that wrote us up a sweat test! We were not surprised to learn of his diagnosis. At first, we were devastated. We started to learn more about the disease, and although it was still very difficult, we gained a new outlook and perspective on life. It sounds cliche and I say it time and again, but we truly have so much hope for our son's future! Jennifer, feel free to email me if you need to chat or have other questions.
Carey
Bono40@aol.com
Sorry for the delayed response. You asked earlier how we found out about my son's diagnosis. He'd had symptoms that I found to be strange from the time he was 3 months old. We brought these up to various pediatricians (eventually realizing they were cf symptoms: salty when we kissed him, lack of weight gain, continuous cough...) and it was finally a wonderful physician's assistant that wrote us up a sweat test! We were not surprised to learn of his diagnosis. At first, we were devastated. We started to learn more about the disease, and although it was still very difficult, we gained a new outlook and perspective on life. It sounds cliche and I say it time and again, but we truly have so much hope for our son's future! Jennifer, feel free to email me if you need to chat or have other questions.
Carey
Bono40@aol.com
Princess76
New member
Hi Jennifer,
I'm sorry to hear about your baby girl, but I'm happy for your sake you did find out early on. For myself my mom was 20 when she had us, I was an identicle twin. My twin sister and I were very sick babies, no one could understand why. At almost 5 months my twin died and the autopsy concluded CF...I was then rushed (flown) to Hospital for Sick Children in Toronto (we we're in Thunder Bay at the time..22 hr drive away) They began the CF care I needed. I'm almost 29 now, in pretty good shape. I've been in hospital numerous times and had allot of ups and downs but over all I'm doing great. 5"4, 119lbs and FEV 68%. I was able to live a "normal" life. My parenst are amazing they treated me like anyone else. I'm sure as a mom it must be devestating but you gotta be strong and be sure to give your child the best love and support you can. A strong and happy mind is more powerful than any treatment or medicine out there (although, you must keep with them). You did the right thing by coming here and getting allot of positive support, we'll all do the best we can in answering your questions and being here for you when times aren't so good. I wish you all the best, and remeber, God doesn't give you what you can't handle and whatever you over come will only make you stronger.
I'm sorry to hear about your baby girl, but I'm happy for your sake you did find out early on. For myself my mom was 20 when she had us, I was an identicle twin. My twin sister and I were very sick babies, no one could understand why. At almost 5 months my twin died and the autopsy concluded CF...I was then rushed (flown) to Hospital for Sick Children in Toronto (we we're in Thunder Bay at the time..22 hr drive away) They began the CF care I needed. I'm almost 29 now, in pretty good shape. I've been in hospital numerous times and had allot of ups and downs but over all I'm doing great. 5"4, 119lbs and FEV 68%. I was able to live a "normal" life. My parenst are amazing they treated me like anyone else. I'm sure as a mom it must be devestating but you gotta be strong and be sure to give your child the best love and support you can. A strong and happy mind is more powerful than any treatment or medicine out there (although, you must keep with them). You did the right thing by coming here and getting allot of positive support, we'll all do the best we can in answering your questions and being here for you when times aren't so good. I wish you all the best, and remeber, God doesn't give you what you can't handle and whatever you over come will only make you stronger.
Hi Jennifer,
I'm also pregnant, I'm due Sept 5th and my husband and I are both carriers of the cf gene. I went for the amnio on Tuesday 3/22/05 and am waiting for the results. I read your post prior to my amnio an I asked the u/s tech about the Ecogenic Bowel and she told me she didn't see anything to indicate it. Then the doc came in to perform the amnio and she had him take a look at which time he said it looked bright to him, he advised me that if the bowel area is bright like the bone it is an indication of cf. Now, I'm really worried. I still have a while before my results come back and I was just wondering if you could explain to me what you saw on the u/s. Was it just a bright bowel or something more.
Thanks,
Jen
I'm also pregnant, I'm due Sept 5th and my husband and I are both carriers of the cf gene. I went for the amnio on Tuesday 3/22/05 and am waiting for the results. I read your post prior to my amnio an I asked the u/s tech about the Ecogenic Bowel and she told me she didn't see anything to indicate it. Then the doc came in to perform the amnio and she had him take a look at which time he said it looked bright to him, he advised me that if the bowel area is bright like the bone it is an indication of cf. Now, I'm really worried. I still have a while before my results come back and I was just wondering if you could explain to me what you saw on the u/s. Was it just a bright bowel or something more.
Thanks,
Jen
Jena, You say that with many families, you could not find CF in your family?? My nephew is going for testing for CF and I thought we would be safe since there is no history in it in our families. I thought CF was a genetic issue.....that it is passed down from generations somewhere?..... so could my sister or her husband have a carrier of it, but was never diagnosised with it, our their other 2 children?? my nephew has only gained a pound in the last year...please pray for our strength.
It is estimated that about 80% of those that are diagnosed with cf do not have family history of the disease. It is a recessive gene, so it can be passed through many generations without anyone actually having the disease. We had no idea that the cf gene ran anywhere in our family when my daughter was diagnosed three years ago.
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
Thanks! my nephew has many respiratory colds that last a long time, and he was born full term, but has a low weight for his age....only gained a 1 lb in almost a year. he has had 3 chest xrays ....all showing bad signs of infection. he also has diarrhea alot.....what kind of symptoms have you seen or do u see in your children? <img src="i/expressions/face-icon-small-confused.gif" border="0">
II will keep your family in my prayers during this difficult time. The Lord has brought us so much joy through my family's challengings times. What a blessing that we are closer to Him. For us a diagnosis gave us the medications that my daughter needed to thrive. So while it is a hard diagnosis to hear, it does bring medications and treatments which can help tremendously. Both of my children were diagnosed when they were infants so we have had medications from the start to treat the symptoms. Here is a good link to some of the symptoms that kids with cf can have.
<a target=new class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/cfsymptoms.htm
">http://www3.nbnet.nb.ca/normap/cfsymptoms.htm
</a>
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf
<a target=new class=ftalternatingbarlinklarge href="http://www3.nbnet.nb.ca/normap/cfsymptoms.htm
">http://www3.nbnet.nb.ca/normap/cfsymptoms.htm
</a>
Sharon, mom of Sophia, 3.5 and Jack, 1.5 both with cf