KYRA LOPEZ CASTILLO's Page

Hi Maria
I am sorry that you are going through such a terrible time. Orla has now had a gastrostomy after managing for a year with an NG tube. The gastrostomy was the best thing we could have done and things have improved since then. She didn't have the Nissans as she retches too much and it would have been dangerous. She is still sick about 3 times a day which is a lot lot less than it used to be (about 30 times a day). She is now 18 months old and is gaining weight each week and now walking and a pretty happy baby most of the time. She still won't eat or drink anything orally though. We still haven't had an absoloute diagnosis for Noonans although she has all the physical symptoms. Her heart mumour is minor and has improved. I have to say that it's been an absolutely terrible 18 months. However, I am now back at work and Orla is doing well. I would be more than happy to talk to you if you want. My mobile is 07971 129 028 and you can call me after 6 any evening apart from today. Katie