| hi. my daughter Emma is 14 months old and has neurofibromatosis. its not the same but thought you might like to chat anyway. ↑ |
| hello- please tell me about your daughter? ↑ |
| well, her name is Emma and she just turned 14 months old. i havent had a really hard time with her except when she was born. she was in the hospital for four days after birth and the whole time she was in the nicu. i never got to have her in my room and then had to leave her there overnight. i asked so many times why she was being held in the nicu and got a different answer every time! ↑ |
| I remember having to leave Bradley in the hospital- he was in the nicu for 3 months- leaving him there was one of the hardest things to do. We lived 3 hours away, so we called all of the time and stayed there as much as we could. Since we already had one child at home, and trying to manage to get to see him and going back and forth to the hospital was a nightmare. I also remember the doctors not telling us things. Sometimes it was so hard to get them to answer any of our questions. We don't seem to have that problem any more-- I got really upset about 7 years ago and kinda blew up and now they are really good at answering my questions. The main doctor that Bradley sees told us to put him in a group home and walk away . He said the only difference between Bradley and a "vegetable" was that Bradley could breathe and eat on his own. I was 6 months pregnant with our 3rd child at the time and a nervous wreck anyway and also pretty emotional and let him have it!! Made me feel alot better!! Now he treats Bradley and us great.... ↑ |
| its hard to believe that the so-called "professionals" would say that to a parent ya know? ↑ |
| Our son was born prematurely as well he was 2 lbs. 14 oz and was 12 weeks early. He just now is only 19 months. We have four other children that are all healthy and this is all new to us. We are just beginning to experience more complications and I am looking for parents that might be able to relate with me. Our son can't sit up or do much yet but, he to has a smile that melts everyone's heart. I can't imagine not having him in our life either. ↑ |
| Hi- my daugher was born at 30 weeks the size of a 27 weeker. 2lb 3oz. She was diagnosed with severe PVL in the right and left side also front to rear. She has not been diagnosised with CP but they keep telling us that is where it is going to go. I don't know what to expect. I don't listen fully to the doctors because she is doing things that they had already said that she wouldn't. She is only 6 months 4 corrected. I still have a long ways to go. I really need someone else to talk to going through the same thing or have gone through the same thing. ↑ |
hI-my son Joshua was born at 32 weeks along with his twin brother. We were told kinda the same thing...to put Joshua in a corner and go on with life...Obviously these doctors don't have a child with special needs!!! Joshua is now almos 20 months old. Although he cannot talk, walk, see, eat on his own...etc. He can hear and smile. It is amazing how much he contributes to our family and life.
However, it is a hard journey and I would love to chat!! ↑ |
| I to have a son with CP. He is only 16 months old and to shares the same melting smile that your son exhibits. I am looking for parents to talk to as well. ↑ |
