Hi

my daughter has many things going on. She was born with multiple birth defects and has had 9 surgeries. 3 were open heart surgeries. She also has mild spastic cerebral palsey, central auditory processing disorder and asperger's and/or nonverbal learning disability. She has only 1 kidney and has major heart problems still. All her internal organs didn't form right and are not in the right places.

We are facing some new problems as she is getting older. We were told her heart condition was under control but we have concerns. She has a heart rate of 42 bpm, leaky valves, small hole and 1st degree block along with some other things. She now has something new going on with her knees. They have been purple every day. Both knees turn purple regularly. We went to the ortho to see if it was related to her CP and tight muscles but he said no. He said we need to see cardiology. I'm a little worried. Ok, a lot worried. It just seems weird that just her knees are purple. Her hands and feet get ice cold but no color change.

Also she is being evaluated for seizures ...we're pretty certain she's having them now. Seizures develop both with CP and Autism in adolescents which nobody ever told us.

Also, I have a question that maybe someone can help me with. My daughter has not been develeoping normally. She is very short which goes along with this syndrome she has. But now she is having problems with developing evenly (this is a female thing) her chest is not even and she's extremely upset. I don't know where to go for this. I asked the pediatrician but he didn't give me the time of day...he just said he wasn't surprised. Well this poor kid has so much on her plate ...this is a big deal for her. Also, I am concerned about other female organs and whether they are developed right. Especially since nothing else really turned out normal. I just don't know where to go now..what Doctor do I go to now?

I also need to find an OT that deals with sensory integration which is almost impossible.

Well I'm in pain so can't type anymore. I have TOS and RSD so typing is a real challenge.

Off I go...good night