Do you notice with the chest PT if Conner coughs out the mucus yet? I really haven't noticed anything with Bailee yet. I spent the first few weeks after we found out Bailee had CF crying too. I wasn't taking good care of my other two girls. I was just doing stuff to survive. What antidepressant did they put you on? I am glad that the medicine is helping you. I have a friend who has bipolar really bad. So I know how it can affect people. I don't think there is a normal after you find out your kid has CF. You adjust as best you can and find a new normal. You know what I mean?? They thought the rash was from the formula, but they said it is baby acne really bad because she sweats so much from having CF. So now we have to make sure we wash her a certain way every day to keep the acne under control. Does Conner sweat a lot?
We have noticed that he coughs alot more but we have not yet seen any mucus.Conner also sweats quite abit I really have to watch what I dress him in or else he gets heat rash.They put me on zoloft,seems to be working well.It's amazing how your whole life changes when you find out your child has CF.We had bought two houses that we are making into one and now we are going to have to move because all the dust from remodeling and the road we are on is well traveled by coal trucks,and that is not good for Conner.I also quit my job because I worked in a daycare and the kids are always sick and passing germs back and forth and just stuff like that, then you have the emotional end of it.You are very right in saying you have to find a new normal.Conner started cooing and smiling last week,I just love to watch them grow but on the other hand you wish you could keep them little forever.
Hi I have grown up wiht cf, im 13 now. When I started taking enzymes, I was 2 1/2 (diagnosed after having pnuemonia) and ever since iv just got used to them. However, apparently the doctors told my parents they could have the same effect as you described. I'll get back to you in more detail.
Its is also common for children with cf to be a lot more sweaty than children without.
I know it's hard and my parents went through hell which is how I know they love me and support me. I can see you love Connoe very much and I think thats the best thing you could ever do. Keep it up!!! He obviously likes it if hes smiling!!!!! I hope all goes well, keep me posted!!
xTonix
P.s. I am a girl although the name is misleading!!!
Its is also common for children with cf to be a lot more sweaty than children without.
I know it's hard and my parents went through hell which is how I know they love me and support me. I can see you love Connoe very much and I think thats the best thing you could ever do. Keep it up!!! He obviously likes it if hes smiling!!!!! I hope all goes well, keep me posted!!
xTonix
P.s. I am a girl although the name is misleading!!!
Hi Jodi! I haven't heard from you in a while I hope everything is ok.Cloey's test came back negitive for CF although she is a carrier I am so happy for her.Conner is doing well, he goes on Friday for his 1st set of shots, I'm not looking forward to that! Hope Bailee is doing well.
Hope everyone is doing well. I am checking in!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
Moderator, Cystic Fibrosis. "If there is questionable doubt, check it out"....with your healthcare provider!. We are here to offer support, encouragement, and answer your questions as best we can. Don't hesitate to step on in and enjoy!.
Hi Heather! Sorry for not writing sooner. Bailee got a cold. Which made her really sick. It affected her lungs and we were at the hospital. She is doing better now. Bailee has been sweating so bad. Now she got heat rash. Sorry to hear you had to quite your job. Bailee has been happy and cooing to us a lot lately. She also is starting to roll. So we have to be careful and not leave her laying any where she can roll off of. I am happy for you and your family that Cloey does not have CF. Bailee goes on April 20th for her shots. I cry evertime...it breaks a mother's heart to hear her baby cry in pain. I had to give up one day a week at work to take Bailee to Dr. appts.. Now money is tight. Anyways I gotta run. I look forward to your next post.
Oh ya, before I forget... our CF clinic walk is April 29th, 2006. I hope we raise enough money to make a difference.
Oh ya, before I forget... our CF clinic walk is April 29th, 2006. I hope we raise enough money to make a difference.
Hi,
One of our walks is on april 29th also, that wouldnt be in texas (your walk) would it?
I am doing mine on October 7th. Unfortunately, we cannot post our walk due to forum rules, but, heck, we can wish you luck!. I chose the October one, so, I could start early raising funds.
Again, Goodluck! and have fun!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
One of our walks is on april 29th also, that wouldnt be in texas (your walk) would it?
I am doing mine on October 7th. Unfortunately, we cannot post our walk due to forum rules, but, heck, we can wish you luck!. I chose the October one, so, I could start early raising funds.
Again, Goodluck! and have fun!
Kathy, mom to identical twin boys with CF (10 yrs), daughter 21, grandaughter 3, Newborn grandson
If there is a CURE for Cystic Fibrosis this very moment and this is "not soon enough"...you would hear this twins mom "Across America" "YESSSSSSSSSS"!!.
Moderator, Cystic Fibrosis. "If there is questionable doubt, check it out"....with your healthcare provider!. We are here to offer support, encouragement, a shoulder to lean on, and answer your questions as best we can. Don't hesitate to step on in and enjoy and remember! "Never give up hope for a cure" one day we will get there!".
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Hi Jodi, How is Bailee doing?I'm sorry to hear she got sick and was at the hospital.What did they do for her to make her better?Did she have to stay in the hospital?How much did it affect her lungs and what did they do for them?Did her dr's put her on the nebulizer yet?They are going to start Conner on it the next time we go up 2 times a day just to keep everything clear and free of mucus.Conner has started rolling over also neither of my other children rolled until they were 4 months we were so amazed.Do you have a private babysitter or do you have to send Bailee to daycare?It must be really hard for you to have to leave her, I know I miss Conner after a couple of hours of shopping.Hope all is going well,we keep Bailee and your family in our prayers.
Hi Toni Heather here sorry it took me so long to reply life gets hectic sometimes! Thanks for posting it is nice to talk to people who are going through the same thing we are.What mutations do you have? And how have things been for you? You sound like a happy young lady! How has it been growing up with CF?What advise can you give me on raising a happy and healthy young man it sounds like your parents are doing agreat job with you!I just don't want to treat him Differently than my other children But I want to raise him to look forward to life even though he has CF.Sorry for all the questions I'm just very curious to do what is best for him,any advise would be great! Thanks!
Bailee is doing better. She spent a few days in the hospital. The Respiatory Therapist came everyday we were there to help with chest PT. They also put her on a nebulizer. She coughed and gagged on mucus. She is still coughing up mucus, but it's not as bad as it was. We take Bailee to a daycare center. She is around 3 other kids and the daycare worker. Bailee actually got the cold from my boyfriend. He got it from someone at work. It is very hard to leave her. I feel relieved when I get home. I really miss her. I spend alot of time thinking about holding her when I am at work. How has Conner been? My thoughts are with you and your family. Bailee got her shots today. I think all the traveling and spending at least 6 hours at the doctors is wearing on me. I do it every Thursday. By Friday all I want to do is spend the weekend at home napping. Bailee is starting to finally sleep through the night. Does Conner sleep through the night yet? Well I got to get to bed. Talk to you soon! 
Hi Jodi,How are you doing? How is Bailee doing?Conner is doing great! he weighs 12lbs8oz,how much does Bailee weigh now?Conner is a wonderful sleeper he sleeps between4and 8 hours at a time,and then just wakes up enough to to eat and back to sleep he goes.Do you go weekly to the cf clinic or is your peds Dr. that far away? They only have us coming every other month now with a weight check inbetween.We only live 20 mins. from our CF clinic and 5mins from our ped.I feel for you having to drive that far I know it's tiring just being at the Dr's all day let alone driving.Well gotta go,talk to you soon hope everyone is doing well!
Hi Jodi, How are things going? Haven't talked to you in a while and was just wondering how Bailee was doing? Conner is doing great! He weighs about 14lbs and is eating some cereal with fruit and drinking some juice with a pinch of salt in it on hot days.He goes on the 22nd to the Dr's for his regular visit and they are going to start him on the nebulizer.I hope all is well with Bailee and your family hope to hear from you soon.
Heather
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. She is tiny but so beautiful!!!! Not that I am biased!! Leah is also on some food supplements to stop her constant hunger. She is chatting away non-stop! A right little story teller. ( if only we understood)
Glad that Conner is doing well. It's actually hot here in UK today so I might suggest a little salt in her food. Heat isn't usually a problem here in the north- it's usually raining!
Sea 2
Glad that Conner is doing well. It's actually hot here in UK today so I might suggest a little salt in her food. Heat isn't usually a problem here in the north- it's usually raining!
Sea 2