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maysonsmommy

New member
My son is almost nine months old and was diagnosed after having meconium ileus which i didnt find out he had until a week before he was born. He was in the hospital for 2and a half months. He is doing well now and me and my husband were just wondering if anyone has any information to share on having more children. I hope to chat with some of you soon.
 

JazzysMom

New member
Welcome & since there wil be so much to obsorb I suggest you write things down in some type of log.l Both what you discuss with the doctor & suggestions from here.
 

maysonsmommy

New member
Thank you for your reply. It is an awful lot to take in at first but when I look at my beautiful baby boy he is worth every minute of research and questioning,which i have to do very often by the way. We are also trying to find where has the best clinics,the one here is okay but it isnt actually a CF clinic.
 

babyjaden2004

New member
Where are you from? It is alot to take in and I do like you and look at my Jaden and think WOW what a wonderful gift I was given. Write everything down. Keep track of everything. I have a folder, a notebook, all the meds you name it. If it has Jadens name on it I have it. We have good days and bad but we get through them. I'm very postive about things so it helps. I know some have hard times but you gotta really try and stay postive.
 

debs2girls

New member
Hi Mayson's mommy, welcome to the site....I am assuming you are tweeksgrandpa's daughter....I have been talking to your parents lately. They seem like great people and very devoted grandparents....I am a grandma myself so I can relate...lol...
I hope you get as much or more comfort from this as I have. There are alot of wonderful people on here.
I cant wait to get to know you better.
Debbie
 

JazzysMom

New member
OH MAN I never connected tweeksgrandpa to mayson & he did tell us his name. Welcome.....your Mom & Dad (she did the typing) were on the chatroom one night in addition to the posts. Glad to see you joined us!
 

izemmom

New member
Hi Mayson's mom. My daughter was also born with mec. ileus, but thankfully we had only a 3 week hospital stay. I have absolutely no information on having more children, but it's a subject that's on my heart alot! I really wanted three (Emily's #2) before she was born. Immediatley after she was diagnosed the thing I grieved about most was never having the chance to have another child. I loved being pregnant and I have had great labors - I jut really feel as if I'm meant to have one more. But, in the total shock of learning that we'd be dealing with cf for the rest of our lives, I totally began to feel that it was all over. Now, two months later, while its still too insanely early to even think about having (Or making...sorry if I'm being too personal <img src="i/expressions/face-icon-small-smile.gif" border="0"> )another child...I can at least consider it in the future. After all, any other child we would have has the same chance of not having cf as our beautiful non-affected first born. And, if the next one did have cf, would that be the end of the workd? There are many many people who post here who have more than one child with cf. It can be done. So, when the time comes, I'll close no doors. Now, to convince my husband... Anyway, if any one has any advice or information I'd welcome it too. Oh, and by the way, thanks for mentioning that Mayson's doing well now. I need every ray of hope I can get from someone who started out like we did!
 

anonymous

New member
DS was born with meconium illeus. Had to be lifeflighted to a hospital about 250 miles away that night and surgery performed the next day. He spent a month in that hospital recovering and then another two weeks in a local hospital. He picked up an infection that's common in NICUs and had to have IV antibiotics twice.

DS is 2 1/2 and he goes to a daycare center. Our first year was kinda scary, afraid we'd end up with more bowel problems, surgeries etc. We have a local nonacredicted clinic where we live and go about once or twice a year, just to maintain a rapport with a local doctor. We go to an accredited CF clinic in the City twice a year -- in the beginning we went every 2-4 months until they got DS figured out. We were also concerned that if DS got a cold or sore throat or something -- what kind of care would we get locally. We had our CF doctor do some checking and find a local doctor he was comfortable with. A lot of general practictioners aren't familiar wth CF and don't understand that sometimes an upper respiratory infection or sinus infection can lead to something worse if not treated properly. In fact DS had a rash from an allergic reaction and we had to take him to urgent care -- there was a drug I just wasn't too sure about, so I called the CF clinic -- they said absolutely NOT.

Liza
 

anonymous

New member
Oh, thank you so much. I've often seen these initials and wondered what they meant<img src="i/expressions/face-icon-small-smile.gif" border="0">
 

anonymous

New member
Hello Mayson's mommy to find a good clinic around you go to the www.cff.org this site should tell you where in your area or State that you live in would be located at to answer your question about a cf clinic near you.
 

anonymous

New member
Thanks everyone for your inputs yes i am tweeksgrandpas daughter. We live in Wichita Kansas does anyone live nearby? On the subject of more children we definatley will mayson is nine months yesterday so not right away but in the future for sure.
 
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