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[Shelby]

My daughter is 9months old, and was diagnosed in May of this year at 5 months old. She spent 6weeks in the hospital the first time, because she had failure to thrive, aspiration penumonia, a vitamin deficiency, reflux, and numerous other problems. While it was a relief to know that she had this disorder and it wasn't something I was doing. I was really irrated at her primary doctor for not finding this sooner. By the tiem she was 5 months she had 3 bouts with pneumonia and had been on anibiotics nearly all her short life for chronic upper respiratiory infections. She only weighed 8 pounds at 5 months, but ate 10oz every 3-4 hours, She had all the symptoms and had been presenting them from birth. She has been in the hospital twice in the last 3 months. I am having a hard time believing that she will live a normal life, she takes so many medicines and breathing treatments. Not to mention the G-tube and port that she has are visible to staring eyes. How do I give her a normal life, if she can't be in daycare or around other kids, because fear of RSV. How do I have a noraml life, when I can't find a baby-sitter because she has all the meds , and has to be fed through her g-tube. I know that she could have a worse disease, but I can't help but feel sad when I look around and see other babies without oxygen and without g-tubes. Any advice would be greatly appreciated. crsnm@yahoo.com

 

[swingswing]

first off, personally i hate regualr doctors and have never really gone to one, i go to the CF clining minimum every 2 months, sometimes every other week, theyre like my second family and i can just call them whenever and talk .....having said that...let me just tell you my story, i was born w a rare, for CF, problme...i had merconium peritinitous, its when you have a blockage when your born, but even worse, the blockage burst, while i was cominig out of my mom!...i was in the hospital with everyone attached ot my body that they poissibly could, there was almost no way i was going to survive, i was in the hospital for 2 and a half months, my parents came to visit me at least twice a day....i have 3 older siblings at the time, and my mom had ot watch them as well...and so my dad and her i think took turns to see me, when i finally came home, which was a MIRACLE, they had to watch me around the clock, due to me being in the hospital for so long, i was delayed developing...like i would be afew months behind , so i went to a special school until i was like 2 until i was like every other child, sort of speak, and then came nursery,,...my mother didnt send me to nursery bc all the kids had been getting colds and sick,...i went to school starting in Pre-K 4 yrs, and have been in school ever since, yes as a child there r days in which your sick and have to miss school....but its ok...i didnt go to camp with my friends, i went to camps locally so i could be home and watched....if i was ever sick my parents would tell me im fine and not to worry, (meanwhile they were worrying but didnt want me to get worried)....its just something you i guess learn, it will be tough but im sure you'll be a Great mother!....treat her as normal as possible, shell have to learn that she cant go on sleepovers(but they can come to ur house!! hehe), which is hard, esp if someone has a cold, and to watch herself around sick people...Yes, i wont lie, its hard sometimes as a child not being able to udnerstand why you cant do some things that others can....but you can do a lot more!...get her into sports, and fun games, so she can excersise and cough, and just have fun!....You'll be a Great mother, Im sure!...just have fun with her and enjoy!!
Gabby 19 w/ CF

 

[anonymous]

Hi Shelby, You are going through what I believe all mothers of newly diagnosed infants go through. I know I felt the same way and asked similar questions. In fact, my daughter is 18 months now, and I still ask similar questions. My daughter has also had a difficult time both digestively and with respiratory. She has had a few hospitalizations, I.V.s, g-tube, etc. She has also cultured several major bacterias. It's very hard for me to see how CF is affecting her physically. However, one thing I can say, is that she is the most positive, fiesty, smart, and enjoyable child. (I know I'm biased!) But really, I have watched her develop such a beautiful personality despite everything she goes through. AND THAT is what keeps me going. Your daughter is at the age when her personality will begin to shine. She will start walking, talking etc. These are the things you should focus on and enjoy. Draw on her inner strength because she will also depend on yours. Good luck and e-mail me anytime mdgoslin@comcast.net

Maria (mother of three daughters, the youngest Samantha w/CF

 

[Drea]

Shelby and Maria (and anyone else who is interested)
feel free to check out our site at http://groups.msn.com/TeamRachelJane Racehl is about to turn 6 and was diagnosed at 9 months. She was in and out of the hospital alot at first. it can change. Rachel hasn't been hospitalized since she was 2.
Andrea
mom of Rachel nearly 6 with CF and Jonathan 12 weeks, carrier

 

[anonymous]

I might add my 2 cents here too. I was also very, very sick as a child and it did seem to improve after I turned 2 (digestion). This doesn't mean it does for everyone, but I've heard this from more than one source, so hang in there!

 

[anonymous]

Hi Shelby,

I completely agree with Maria and Andrea's web site is great (thanks for all the good advice, Andrea). I still remember these same feelings when my son was first diagnosed. I can honestly say (and I think most parents would agree) that it WILL get better. Hang in there! CF is a part of our every day life. Sure, we have bad days. And, at first, it was very overwhelming learning how to deal with all of the meds and treatments (not to mention all the emotions I was going through). Now, we've got it down to a science and my son is doing great. There have been times where he has struggled, but our cf team has been so wonderful and supportive. Shelby, the tides always change. And things won't seem this bad forever. Please let me know if you have further questions or need anyone to talk to.

Carey
bono40@aol.com

 

[anonymous]

Hang in there! My daughter is now 7½ months old. SHe also went into the hospital at 2½ months old due to reflux. SHe was aspirating in her lungs and even had to be put on a ventialtor for a few days. She ended up having the Nissen surgery that I am sure you are familiar with for the relux. It has been a life saver. She does have a G-tube, now, but we have always only used it for burping her. We have not used it for a few weeks and hope to get it pulled soon! We were devistated when we got the CF diagnosis and I am still not sure I have dealt with it yet, but Hayley is thriving. THe enzymes (She takes Creon 5) are doing termendously. She went from the 5th percentile in weight at 2 months to the 50th percentile at 6 months and now weighs a whopping 17 pounds! She is also in the 75th percentile for height and growing like a weed. She is doing all the normal baby stuff, just slightly behind on some things. All of our family and friends always comment that if they didn't know she had CF you would never be able to tell she had been so sick! So please keep the faith! Your baby will not always be this sick, I have heard the first 2 years are the worst! You do have happy times ahead of you as your baby grows and gets healthier!!! We just keep praying for a cure! She can lead a normal healthy life!!! Please e-mail me anytime at Quaintancer15@msn.com!

Becky, Mom to Nathan 3½ years old without CF, Hayley 7½ months old with CF