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Well, Grayson is doing just great, she had clinic yesterday and she is 8mos old and now weighs in at 15lbs. She got a MicKey finally and no longer has her tail.hehe My daughter has taken alot of advice from this forum and used it for extra calories(especially the carnation milkshakes)Graycie...

Has any of your children been on ABX for pseudo on and off for days at a time? At what age did they start this? Has anyones child colonized this? And how do they know if your child has colonized it? Does your doctor treat this aggressively? Sorry for all the questions but i don't think we are...

Well, yesterday when my daughter took Grayson to the clinic they admitted her right away. Poor baby is back in the hospital after only being home for a month. They didn't inform us that 3 weeks ago that she had cultured pseudo and staph? WTH is wrong with this place? We kept calling them because...

I want to smack someone or something. 3 weeks ago Grayson went in to the hospital and had a throat culture. When my daughter called they said nothing cultured. Then over a week ago Grayson started coughing and crying alot more. And my daughter called the clinic again and they told her to go to...

Hi All, everything had been going along pretty smoothly since my granddaughter got out of the hospital a few weeks ago. She is on a continuous feed and is slowly gaining weight. She is almost 6 1/2mos and is almost at 13 lbs. The doctors now want my daughter to try to start bottle feedings so...

My granddaughters GI dr. said that she needs to have more fat under her skin in order for her to get the mic key. She currently has just the peg in place. Do you know if there is a certain weight she has to be or is it just the layer of fat to hold it??? I was alittle confused when she was...

Grayson is doing great at home now. Almost 6 mo's old. She actually is up to 12lbs 6oz. Mommy is fattening her up. There is one problem that we are dealing with. She wakes everynite and throws up as many as 3 times. She does have acid reflux and sleeps inclined. You can hear her stomach make...

My daughter is bringing Grayson home on Monday, she now is having questions regarding traveling with the G-tube. She is on a continuous feed and wants to know how the rest of you do it. Liking visiting family, out to eat,,,etc....she knows that she won't be doing any of this soon but it will...

Here it is after more than 5 months she is coming home. My daughter just called me and said that Grayson is homing home on Monday the 27th. She is doing great with the G-tube and is gaining about a gram a day now. She is no longer on TPN... She is still under 12lbs but she is healthy now and...

Since Graysons birth over 5 months ago, One of my sons has only seen her once. He and his family live closeby and they had a daughter a few months before Graycie was born. Even when we found out before her birth that she had CF he and his wife acted like my daughter wasn't even pregnant...

So its going on 5 months now for Graycie to be in the hospital. The GI doctors and everyone else are telling us that Grayson is a rare case because she had MI at birth and they had to remove 7-8 inches of her bowel. She is still having trouble gaining weight and whenever they try to increase her...

I was just wondering if anyone is on Omegaven? I was investigating TPN and came across this....TPN usually has Omega 6 in it and can cause liver damage but they are now researching Omega 3 instead and it seems to not cause and maybe reverse liver damage...Is anyone tried this? I asked Graysons...

I could cry right now, GDaughter hasn't left the hospital since birth, she is almost 4 mo's old now and everything was looking up. She was scheduled to have either a G tube or J tube today. It was cancelled again. They have changed her formula so many times to count and this last one gave her...

I would like to know if anyone else has had to have their gallbladder removed due to CF. My granddaughter, since birth on 05/18/08, hasn't been home yet. First bowel surgery and then reconnection of bowel. Weight loss, changing formula's, vomiting, jaundice. She is over 3 months old now and has...

Well its over three months now and my granddaughter Grayson still hasn't been home yet. However, good news is that she had her second surgery to reconnect her bowel and her infection is gone and her lungs are clear....Thank God!! Now my question is that since they reconnected her a few weeks ago...

Graycie is now 31 days old and 2 weeks after her bowel surgery she got mrsa. And for the last 2 weeks the poor baby is coughing up at of mucus. They did a chest xray and said it showed pnuemonia and were treating her for that however, the cough and thick mucus just was getting worse. And she...

I was just wondering if anyone lives in Ohio and what CF clinic they use for their children? And how do you choose? Location? Doctors? Care? How do you find out?

Repost from Newly Diagnosed: Grayson is 23 days old and had bowel surgery due to meconium illeus. She has a colostomy bag on the upper portion of her bowel and is being fed through the lower part of her bowel. She developed a fever last week which they treated with antibiotics. I was concerned...

Grayson is 23 days old and had bowel surgery due to meconium illeus. She has a colostomy bag on the upper portion of her bowel and is being fed through the lower part of her bowel. She developed a fever last week which they treated with antibiotics. I was concerned because a few days before this...

My granddaughter is 15 days old she had a blocked bowel that was found at 20 weeks and did an amino and found out that she did in fact have CF. After she was born they had to do surgery to fix her bowel which had twisted and part of it had died. She does have a bag right now but since the...