Hi Jaelor, My grand-daughter has a swollen tummy but she cannot put weight on so this may not help. The salty taste is there though. Hope you get news soon. Sea...
Hi nannavera, I am from England too, in Lancashire. Have you looked at the information that the Cystic Fibrosis Trust have to give. It is full of interesting information, ways to fundraise, has lots...
Hi, My grand-daughter has CF. She is one years old. Routine: Wake up, physio, antibiotic, ketovite bottle of milk with creon in apple sauce. play, have fun, physio, vitamins in 4 syringes, eat with...
Hi Ann, I am sorry you are still unsure. I wish you luck in your pursuit of an answer. There would be no harm in asking for a sweat test as it is a short harmless procedure. Sorry your family have...
Hi Ann, did you get the results of the blood test? Clubbing is, I believe, more noticeable in cf people when the oxygen levels in the blood are low. Hope you have heard news. Sea 2...
/community/emoticons/smile.gif Thanks Sandra, I hope all goes well for Trace at his check-up and glad your "racer" is healed!!! Love Sea...
Hi, Hope you're both okay and that the twins, and Gage and Trace are doing well. My grand-daughter Leah is 9 months old now and is on 25th centile for weight and height. She was on 2nd centile I...
Hello and welcome, I am a grandma of a 71/2 month old baby girl with CF. There are two moderators called Twinstride and Imondeck. I am sure that they will welcome you soon....
I am very glad for your news. Thank you for letting us know. You are not on your own not giving CF a thought until it hits close to home. I suspect that most people don't give it a second thought...
Hi, My grand-daughter was diagnosed at 6 weeks old because of failure to thrive. She had pneumonia at 4 weeks old and was in hospital for about 5 weeks. Being in hospital for so long must have been...
Hi, My grand-daughter was diagnosed at 6 weeks old. I can well remember how scary the idea was then. She is 7 months old now. From the beginning it was obvious that something was not right. She was...
Hi, My grand-daughter aged 7 months has cf. My gut feeling is that the coal fire, even though it is a multi-fuel burner, will be harmful to her breathing. My husband doesn't agree. He thinks as long...
Hi Sandra, Glad that Gage's foot has done so well at last. Sorry that Trace still needs those extra pebbles. Leah is 16lbs 6oz now which has taken her above the 2nd centile....
My daughter says that Leah is not a pebble anymore. She is a stone!!!! 14lbs 11oz. ;) Hope Gage's foot is improving and Trace feeling better. Sea 2...
Has anyone seen this? Does anyone know anything about this? http://www.sciencedaily.com/releases/2006/06/060629230846.htm ...
Thanks Sandra, I know people do mean well. Everyone says how you can't tell by looking at Leah and say how big she looks in the paper. She does! And at last she is in 3-6 month clothing!!! She is...
Hi Sorry to hear that Gage is still having trouble with his foot. I hope it is a bit cooler so that Trace feels a bit better. It has actually been quite hot here for the past week. Leah is still 13lb...
Here in the UK they advise againdt two CF people meeting in case of cross-infection. However, there are some families with two CF people and they don't catch each others infections so I think it is...
CF people often taste salty. If you wet your lips, kiss him and your lips taste salty then that could be a sign. Do his stools float or look greasy/oily? That is another sign. My grand-daughter had a...
Sorry you are feeling so sick. I am a gran of a small baby with cf. Your poem tugs at the heart strings. Sea 2...
Sorry that Trace has been suffering with the heat. We don't often have that problem in the north of the uk! Gage should be due his check-up any time now I believe. Keeping fingers crossed that all...
Hi Lolz, Hope you are okay and so busy that you haven't time to look on here. /community/emoticons/smile.gif Hope the trip back goes well. We are here if you want to talk. Love Sea 2 x...
Leah has gained more weight this week as her Creon has been upped. She now weighs 13lb 3oz at 5 and a half months old. She is still in 0-3 months clothes but as she experiments with sounds and...
Hi Lolz, I hope you had a good 4th July. I ended up going out for a meal to an Italian restaurant and Italy were playing Portugal in the World Cup football. Suddenly, late on in the evening all the...
When I was 18 I used to characterise myself as a dried up empty carcus revealed when silky fronds are blown apart. Im still here....not perfect but still here. Take heart !...
Hi Lolz, I certainly didn't think you were just a kid! What you are achieving with your life proves that. I'm glad that your friend has invited you over. I hope you have a good 4th July. I think your...
Hi Lolz, Your friend is 36 and she has two children, aged about 9 or 10 ? When you arrive she puts her life on hold to do lots of fun things with you. However, young children demand a lot of time and...
My grand-daughters coughing and wheezing has been much better since we bought an air purifier but she didn't cough as much as your daughter before. If the coughing improved in hospital then it's...
Hi, I am grandma to Leah age 5 months with cf. Since her diagnosis I have been reading up as much as I can. However, I am not living with it every moment like you but I hope I can be of some help. I...
Hi Tricia, I don't blame you for feeling down at the moment , you have been having a really rough and stressful time as well as feeling ill in yourself. Someone in a past thread advised having an air...
Hi, I have not got depression and am not greatly overweight so I don't know how much help I can be. However, I can list some of your latest achievements. 1. You travelled to Florida. 2. You made...
Danny was such a beautiful boy. Love Sea 2...
I am sorry you are feeling so down. I have not been treated for depression so you can ignore everything I say if you like and I am sure you will get much better advice from others on this site....
Scot, please don't be self-critical. Loss is extremely hard to deal with. I lost my dad 13 years ago but not yet my mum. It was very hard to deal with Dad dying but I dread Mum going too. On top of...
Leah had 3 monthly check-up today. She is on the 2nd centile for length and weight ( I don't really understand what that means) but her chest is clear so they are pleased with her progress at the...
Hi, Leah, aged 19 weeks, now weighs 11lb 11oz. It feels like Catch 22. She is having some supplementary solids to keep her hunger at bay and it seems to be working as she is happy in herself and...
Twinstride's last message on forum thread said something about boys being off for a few weeks and a possible trip to Austin Texas-swimming holes. We all feel for you Tricia. Sea 2...
Sorry to butt into this conversation but bailee, conner and my grand-daughter Leah were born all around the same time. Leah weighs 11lb 11oz and she is 18 weeks old now. Slightly older than Conner....
It says they are incinerated but you would think that there would have to be a lot of heat to do that and yet it says the purifier itself doesn't feel hot....
didn't find the site until after purchase of filter one....
http://www.breathingspace.co.uk/pages/airfree_p80.php What do you think about this ?...
I am really sorry that this has happened. I can't excuse it. I remember when my dad had cancer and he was treated with chemotherapy so his hair began to fall out and one morning he showed the hair on...
Yes, It does give you a buzz being chased by another man, especially if your husband is not around as much as you would like. However, if you care for your husband and deep down you love him, then,...
Thanks Chaser, It sounds like a similar make. Leah used to have bad coughing fits every morning but that seems to have changed now. Also thanks for your reply about the hiccups....
Does anyone use one? It seems to be helping Leah (age 18 weeks) living in uk. (in the rainy north)...
Don't think that the lack of replies is because people are judging you. They aren't. Just sometimes it's difficult to know how to help. Most women will have gone through the feeling of being...
Hi all, Grandma to Leah here. Last week she was supposed to weigh 11lb 13oz which was a massive leap in weight and seemed suspicious(from 10lb 6oz the week before). This week when she only weighed...
Alyxandra, I would take the advice of Hope3/Wanda regarding chat. You are alone much of the time with young children to look after and that is never easy even when they are your own. You need someone...
Leah has many bouts of hiccups-even when she was in the womb. Do other cf children get hiccups ? They don't seem to upset her- just wondering. She seems bit better at moment. Still coughing but less...
Is this the same boyfriend as in your first post- who is caring and would never do drink or drugs? You are the only one who can decide who to be friends with. You were very unhappy with your...