Last one of the Year!

In my last post I had mentioned Molly needed to go back to the eye doctor because we had noticed that she was tilting her head again to compensate for her vision. We went back last Monday. They are kind of stumped and I'm confused as to why because to me it makes perfect sense. They don't understand why she is tilting her head so much. They are trying to prove that her head tilting has nothing to do with her vision but it has everything to do with it. While we were there they put a patch on her eye and they were hoping we could just patch it and that would be the answer but she still tilted her head. They put her in a mild prescription and she never tilted her head. They looked back through their notes and the last time we saw any head tilting was a year ago September when she wasn't wearing glasses so we are going back to glasses. The doctor said that she will probably need surgery in the future because her eyes are misaligned but for now we are going to stick with glasses until it's absolutely necessary. Her glasses should be in this week.

I had an appointment with a child psychologist today regarding Molly's anxiety issues. She didn't tell me anything I didn't already know but it was nice to have confirmation that we are doing all of the right things. I went through her medical history and developmental history (she will meet Molly on her next visit). I told her that I think the majority of the problem is that she can't tell me what is wrong and she said that is 100% correct. I also told her that I try to explain to her in great detail what we are going to do, who is going to be there, etc and she said that is exactly what I should be doing and I'm doing everything right. She seems to do better when it's the two of us and we can take our time and just focus on each other and not what is going on around us. She said that if we (Jay and I) start to get anxious she will feed off of that so we need to stay calm. She said that if she starts getting fussy, whining or crying we need to just ignore her. Don't talk about it or draw attention to it which is what I try to do anyway. As her speech improves, her anxiety level will go down and I hope that is the case. This doctor used to work in a hospital and she said that the way Molly behaves in new surroundings is so common among kids that have spent as much time in the hospital as she did/does. I said that it makes me so sad that she can't have fun at the places she should have fun at and she loves going to the doctors and therapy. She said that when she was developing and growing that she was always in the hospital, at the doctors or therapy so it's all she knows and it's completely "normal" that she reacts this way but as she gets older it should get better. She doesn't really understand why this happened all of a sudden and she can't make the connection to her anxiety because she isn't just anxious around big crowds or at loud places and it has nothing to do with people...it's on places. So she too is stumped. So Molly will meet her at the beginning of January. She doesn't think there is a whole lot she can do because they don't typically treat kids this young for this reason but she can give me some tools to use and hopefully teach Molly some things through play. Fingers crossed!

We were so focused on saving her life for so long that I never would have imagined all of these issues this far out. She has had to overcome so much more than open heart surgery and it just doesn't seem fair. She has had to overcome narcotics withdrawals, developmental delays, nightmares, fear of not knowing what was next, pain and now anxiety issues. We have got through it all and we will get through this too! But through it all she has remained the happiest little girl and I'm grateful for her today and every day. I hope everyone has a great holiday season and a Happy New Year!