Recent content by proudmom2lilCFer

I give my son his Pulmozyme at night. I used to give it to him in the AM. In the hospital they always do it early in the morning. Just recently he cultured psuedomonas, and I noticed that he was having a hard time breathing while he was sleeping, and he was having awful coughing fits that were...

My son is 2 feet tall, and he weighs 11 pounds. He's only 10 months old, but he is still really small.

No problem. I am glad that I could help clear up your questions. All the kids with RSS have a very distinct look. I personally think they are very cute.

I would love to share my unique story about my son and his crazy chromosomes. He is definately a rare one. But, whatever happens, I would love to see something about CF. I think it is so important that people are aware of this disease, and the amazing people that live with it everyday. Good luck!!

Russell-Silver Dwarfism has nothing to do with CF. It is just like any other form of dwarfism. My son was born with it, and he was diagnosed about 2 months after he was diagnosed with CF. It is genetic. This particular type of dwarfism comes from the number 7 chromosome. That is also the...

They have given him a perscription for cipro (sp?) and tobi. I won't be able to get either one until tomorrow, but I do not have the correct attachment for the tobi on the nebulizer. That probably won't be here until Thursday. He still has a fever and I beginning to get really worried. The RN at...

that's because we are all the doctors around the world put together into 1 incredible knowledgable website.

Well, I talked to his CF doctor this morning. He has cultured psuedomonas. So we are going to treat that, do you think I should still try to get a chest xray? He was puking up 7up looking stuff. That's exactly what I thought it looked like. But about the fever. I have been giving him Tylenol...

Well, we got the results back today that my son does have psuedomonas. So what does this mean? Will he be hospitalized? He has had a fever of 102* since 8pm last night. I am waiting to hear back from his doctor.

My son has been sick with a nasty cough for 10 days now. He is on cephalexin and just finished up his RX for steriods. Then last night, all of a sudden he got a fever of 102*. He was up all night coughing and choking and puking. Then he started doing this thing that was really wierd. He was...

That is awesome. I think sometimes we underestimate kids. Good for them!

My son had a central line and it was wonderful. They can give them IV meds and also draw blood from them. So even though you dread punching another hole in him, hopefully it will be the last one for a long time. I was so thankful that during my son's last hospital stay that instead of drawing...

My 10 month old son has a g-tube. I was very nervous at the first thoughts about doing it, but I decided to just do it and get it over with. It was by far the best decision. I love it. We have not had any complications. Of course my son isn't as active as yours, but if he is in need of calories...

I was asked today to write the obituary for this little girl. Has anyone ever had to write one? I feel like there is nothing in the world that I can write that would be good enough. You can't put into words how special your children are.

My son would sweat really bad at night. We found out that do to his pancreatic insufficiency he was severly hypoglycemic, and it was worse at night, because he was sleeping through the night and not waking up to feed. He is on continous feed 22 hours a day (he has a g-tube), and he doesn't have...