pobrienhazlett's Journal

Journal Entry for June 16, 2007 Mood

Saturday, June 16, 2007

Dealing with having a preemie sure hasnt ended at age 2 like I was told in the NICU. Sure she will catch up by age 2 ----NOT! I learned long ago that she would not but now I am really starting to freak out by the fact that at 4 1/2 she still doesnt talk. We are taking her next week to the ENT to get a scope done to see if anything down there is contributing. I know last time it was done (4 yrs ago) her left vocal cord was paralyzed. Not sure what they will find this time. I guess I'm hoping that someone will give me a physical reason. One that can be fixed. If not, it's guessing whether I'm not working hard enough with her, or whether she will ever be able to do it. It is starting to be very scary. She is supposed to start kindergarten in a year. OK, i'm making myself feel worse now. If we get no answers at the ENT, we are going to the neuorolgist next. I just want someone to tell me that she is going to talk and how to get her to do it. UGH.

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Hi ,
My name is Karan and I have PKU. I wasn't diagnosed until I was 8 years old but because I was 8 no PKU diet. I'm on it now as an adult but have had some problems due to the fact that they never put me on it until much later. I have a younger brother who also has PKU , He was diagnosed when he was 3. Unlike your daughter he wasn't a preemie. My borther didn't talk using actual words until he was about 4 or so. He was mentally retarded but don't freak out his MR was due to the fac t that he was diagnosed late and never on the diet. I hope you're able to find out some encouraging news about your daughter. My advise to you is get her on the PKU diet and keep her on it. It's weird about the vocal cord paralysis( not a PKU thing) much have something to do with being a peeemie. If you ever need any PKU advise feel free to contact me. I'll keep you and your daughter in my prayers.

pkukid