How far along are you in your pregnancy? I just read your last post about how you found out your baby and your son both tested positive for cf. Isn't is amazing how just a routine test can change your whole life? I know this is soooo hard. It really does help to have people that understand what your going through to talk to. It does sound like your son is doing really well though.....considering he has not really had treatments and enzymes for his first 2 years. At least you did find out now though and he can get started on the preventative treatments while he is still very young. How much does Max weigh now and how tall is he? And when did he turn 2? I am so sorry you are having to go through all of this....I just know that for us the first few weeks we were just in shock and I know what you are going through. You will make it though and most importantly with your help so will your boys!
Hi! I just wanted to tell you about our experience. When my son at 2 weeks of age tested positive for cf we had my then 5 year old tested the same week. He had already had several bouts of pneumonia and I was like you TERRIFIED because of this. He has never been underweight and has always been tall for his age so I had to keep reminding myself that that was good! So his test results finally came back and he was NEGATIVE!!!! So try not to worry too much about your son....especially since your husband has not had a positive test yet! Just thought I would try and help ease your mind. I know the waiting can be pure torture!!
Hi Max's Mom, Welcome to HW CF Room.
We hope you find comfort here on HW. I certainly can sympathize with your feelings right now. I have twins with CF. Double whammo! The first 3 yrs, with both being in critical shape it was very hard on me, but, I survived! and you can too!. We as parents all have set backs, but, someone seems to come along (in my case when I am feeling down) that has a disease or handicap that is extremely worse than my twins. At that moment, my overwhelming sad feelings seem to go away for that moment.
My suggestion to you is: I assume your newly pregant? by the time your new baby comes along, you will be well on your way to being an experienced CF Mom. Don't fret! it won't be hard as having two diagnosed at the same time. Since my twins advance at the same rate with this disease, they develop being sick at the same time. It's possible that you can have only one sick at a time due to the age differences and this will help you quite alot in terms of treatments and regimine...etc.
If you have any specific questions, feel free to ask. Someone will have a helpful answer, suggestion, a comforting hug.
Please do skip on over to the thread: Sound Off: CF Member Room and add your info. Someone will learn something about you and your family. You will learn about the folks we have here on HW who are affected by CF.
Here's a shoulder to lean on, and a comforting hug (((((((Max's Mom))))))))
Addition to my post: Right now, you are in "overdrive" trying to research and learn as much as you can about CF. Please, do, take some time for YOU and YOUR BABY! This can wear you down if your not careful. Let your husband be your health manager while you research and learn. Have him keep an eye on you that your eating and taking care of yourself because if your baby has it, the baby needs alot more nutrients right now to help it gain weight. You can get overwhelmed by the vast amount of information, please be careful.
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Post Edited (Twinstride) : 4/30/2006 4:26:08 PM (GMT-6)