Hi!
I have a 4 month old baby girl, Sienna (our first child) who was diagnosed with CF at 5 weeks, picked up by newborn screening. Neither my partner nor myself knew we were carriers-- we were shocked to learn that her sweat test was positive (we had convinced ourselves that it was going to be negative 'for sure'). We live in Australia.
I wanted to introduce myself but also to say that I have read a few posts over the past week and I am so grateful to find people writing about their own experiences. I have only known about Sienna's CF for a relatively short time and I am still experiencing grief over the loss of the perfect, healthy little girl that I thought I had (of course I love my little girl to bits and I know how lucky I am to have her). I couldn't believe it when I read that others had felt the same way. It was great to feel (not that I want others to feel this way) as though I am not alone. Overall, we try to maintain a very positive outlook for her and stay strong because that's what she needs and deserves. Having said that, I think it is safe to say that it is only natural to have good days and bad days, huh?!
Sienna has one DeltaF508 mutation and the other we have been told is Thr1176fs-- but I am not sure at the moment about the accuracy of that name. She has pancreatic insufficiency. She takes her enzymes with apple puree, she has recently started taking vitamins, she is on daily antibiotics, and she also takes Polyjoule to try to add extra calories to her feeds to help her gain weight (she is in the 5th-10th percentile for height and weight). She had a CT scan and bronchoscopy done last week and they have found that she has a bug in her lungs, along with a bit of inflammation. At first they increased the dose of her antibiotic to help get rid of it but after studying her CT scan they have decided they need to take a more aggressive treatment approach. We are going into hospital Mon for IV antibiotics and have been told we will be there at least a week<img src=""> Not looking forward to that but I am just thankful that she is being well looked after by her CF team.
Well, I think that is basically the low-down on us. I'm sorry this ended up so long<img src=""> Thanks for reading and I hope to get to know you all better.
Elle
Mummy to Sienna, 4 months, CF
I have a 4 month old baby girl, Sienna (our first child) who was diagnosed with CF at 5 weeks, picked up by newborn screening. Neither my partner nor myself knew we were carriers-- we were shocked to learn that her sweat test was positive (we had convinced ourselves that it was going to be negative 'for sure'). We live in Australia.
I wanted to introduce myself but also to say that I have read a few posts over the past week and I am so grateful to find people writing about their own experiences. I have only known about Sienna's CF for a relatively short time and I am still experiencing grief over the loss of the perfect, healthy little girl that I thought I had (of course I love my little girl to bits and I know how lucky I am to have her). I couldn't believe it when I read that others had felt the same way. It was great to feel (not that I want others to feel this way) as though I am not alone. Overall, we try to maintain a very positive outlook for her and stay strong because that's what she needs and deserves. Having said that, I think it is safe to say that it is only natural to have good days and bad days, huh?!
Sienna has one DeltaF508 mutation and the other we have been told is Thr1176fs-- but I am not sure at the moment about the accuracy of that name. She has pancreatic insufficiency. She takes her enzymes with apple puree, she has recently started taking vitamins, she is on daily antibiotics, and she also takes Polyjoule to try to add extra calories to her feeds to help her gain weight (she is in the 5th-10th percentile for height and weight). She had a CT scan and bronchoscopy done last week and they have found that she has a bug in her lungs, along with a bit of inflammation. At first they increased the dose of her antibiotic to help get rid of it but after studying her CT scan they have decided they need to take a more aggressive treatment approach. We are going into hospital Mon for IV antibiotics and have been told we will be there at least a week<img src=""> Not looking forward to that but I am just thankful that she is being well looked after by her CF team.
Well, I think that is basically the low-down on us. I'm sorry this ended up so long<img src=""> Thanks for reading and I hope to get to know you all better.
Elle
Mummy to Sienna, 4 months, CF