Days spent with an Angel

I figured since we are still in the hospital and I have nothing to do I would love explain what its like raising a child with holoprosencephaly. First off I am the luckiest mommy in the whole world! She is my daughter, my angel, & my best friend. I would do anything for her and I know if she could she would do anything for me. When I found out about her disorder I immediately went to the internet to look up other families with the same situation. A lot of the parents stated that their child with holoprosencephaly always talked to them with their eyes and they could manipulate anyone that came into their lives. I didn't believe that or maybe I just didn't want to believe, but was i wrong!!! Adriana definitely talks to me with her eyes. She is so prissy and has such a great attitude. I can promise you she rolls her eyes at me or anyone else that is with her at least 10 times a day! She definitely has everyone wrapped around her fingers. She knows if she doesn't want something done to her she can change her mood to where we have to do what she wants. She knows if she gets mad enough we will have to hold her because if we don't we have to take a chance of her not breathing well. She is so sweet. I wouldn't have it any other way. Even when we are in the hospital she knows if she fusses & fights who ever is messing with her enough they will have to stop. As soon as they leave her alone she will peek around to see where they went and if they are still in the room she will start fussing until they leave. We do have some good times but we have a lot of bad times that she cant control. I feel so bad for her because she wants to do so many things but she just cant do it. I am hoping once we start her therapies again she will stay healthy and be able to sit up, crawl, and maybe even walk. Its not easy on her when we are in the hospital for so long either. You can tell she starts getting irritated and stressed just as much as me. We have been here this time for 18 days and we still have till Tuesday before they will discharge her. Pretty much on a everyday basis when we are home if Adriana is well; we feed her every 5 hours, we give her medicines to her, she has therapy on some days, we work with her to sit in her Kimba Chair or to stand in her Stand Up Frame. Usually trying to get her to enjoy her equipment is the hardest task we have. She is usually very happy and very independent. She doesn't like toys but she she loves her stuffed animals. She loves certain stuffed animals on certain days. One day she loves her Minnie Mouse and the next day she will swat at it! She does like curly ribbons that you use for gifts. She will not reach for them right off but if I lay it in front of her she will gradually reach for it and grasp it. She doesn't eat much through her mouth. We get her on a good pattern of eating & drinking for us everyday and then something happens like she gets sick or has to go to the hospital, and it gets her off schedule. She is a very quick learner when she wants to be. She does love the swimming pool and it seems to relax her. Usually in the summer is when we have more success on teaching her new things. We are suppose to have a meeting with her school in the next few months. I am so excited for her but I wish she qualified to go to a school, but I like the fact I will be able to be at home while the teacher is there.  Its not hard to take care of Adriana I just don't have anytime to myself. If I do leave the house I don't go far because I cant chance her having any breathing issues. I am getting a nurse for her soon that way I can get a break. Her dad is very involved with us and is always around to help. He is such a good daddy. We cant get married or live together because of the SSI Adriana receives. Her dad makes too much for the amount they allow in the household. We live in a small town that does not have a ambulance service. When we had to call 911 this past September it took us 2 hours to get to the hospital. When we arrived Adriana was so worked up she coded as soon as they layed her on the ER bed. Her dad lives in a town that has a ambulance service on every side of town. When Adriana stopped breathing on me in May 2009 if we wouldn't have been at her dad's house she would have died. The amount I get for Adriana a month is not enough to do anything with. I don't have insurance for myself because i cant work and I don't want to get her dad for child support because he is such a wonderful person. If we were to get married and I lost her SSI we wouldn't have any money live on. Its like the government expects to me be a single mom & live with my parents for ever. I am hoping our situation will change for the better. I only love her dad and no matter what happens with our situation i will always love him. Maybe we can get a lawyer to help us out, but for now we will have to do the best thing for our baby girl. I am hoping to start school this fall semester. Once I graduate & become a nurse we wont have to worry about her SSI & we will be able to get married.  As you can see we have our ups & downs but I wouldn't change it for the world.