Overview





If you are just joining us, you may want to start where it all began at " introduction" http://mysteryandmiracle.blogspot.com/2012_03_01_archive.html .



My pregnancy came as a surprise to us in march 2011. I was scared but grew to be excited and looking forward to meeting my little girl. We talked about all the things we would teach her and get her involved in. I dreamed of what she would look like and I looked forward to all the firsts and even the teenage years where I feared she would be too much like her dad and I. My dreams shattered when I was told they saw a shadow on her brain. Follow up tests, 3 hours away, gave us her diagnosis. What we were told, was beyond words. Beyond any emotion I ever felt before. Excitement turned into fear, worry, resentment, blame, anger, and devistation. I struggled with depression and had to push myself to try to be happy. Everything changed on Nov, 6 2011 when she was born. I heard her cry and held her. I knew she was perfect and everything was going to be fine. And I knew that I was going to designate my life to help find research and better understanding so no one ever has to go through what we did. I am now working with another mom who had been delt the same hand. She has put together a non profit organization for their diagnosis. Follow our journey, through my eyes and gain a better understanding of these diagnosis, prognosis, how a parent of special needs views the world around them, the struggles of day to day life, most of all, watch my baby girl grow up as she contunies to impress us all. We are so blessed to have this little miracle in our lives. But the future and what lies ahead, is still a mystery.
Feel Free to ask any questions or contact me directly. Email me at pandabear12178@gmail.com.





















Friday, July 13, 2012

Thoughts of lately

Baby girl has been doing great lately so I havnt had too much thrilling to talk about. Early Intervention came over a few days ago and determined she is about 25% delayed, or 3 months behind. Which isn't too bad. It can be hard on me sometimes that shes not doing things, but I know she will get there.
 They are going to get a hand splint for her right hand so she uses it more. Also the OT is going to be working with a lot of scensory tools to help her acknowledge that right hand. Today however, she was actually frequently using it to grad at toys :)
 The therapist is also going to be lending us a bath chair since she is outgrowing her baby tub but its yet able to sit up on her own to just be able to fill the bath.
 I am trying to get her into seeing Kathy for ABM but it hasnt been managable. She was recently approved for SSI which is a huge help. I do have to send in our pay stubs so lets hope they still say shes eligable. I think its complete crap they less you make the more they give you. I would love to be able to work to pay the bills and have SSI be ONLY for Arianna. The way it should be. If it means leaving your job in order to get SSI then you are only breaking even, or even bringing in  less. Defeats the purpose a little bit. I am surprised it only took a month to get a decision. Usually takes about 6 months.
 Jesse called me today while I was at work letting me know when he went to fill up her bath he put her in her crib, on her back and she was playing with her mobile. When he came back in, theres Arianna on her belly, covered up and a NUK in her mouth sleeping. She amazes me everyday.
 I been doing better as far as moods go. Arianna and I have a pretty good routine during the day and the day actually goes by too fast now. Before it seemed to drag on and I spent most of my day wishing I could just sleep or call Jesse crying because I felt like I just couldn't do it anymore. We did have a talk though about responsibilites and hes been helping me out greatly now which takes a ton of stress off me. His sister has also been around to help out and keep me company.
 I been seeing a few soon to be mommies commenting about getting an NT screening/ Amnio. It does boil my blood a little bit. I wonder if it came back showing something if they would abort? I sometimes would like to tell them something like Arianna's DX would not show up on any tests. Its rarely even caught during pregnancy. If you are willing to raise a child with special needs, why checking to see if there is a risk?
 I find it amazing doctors are even able to bring up aborting because of a diagnosis. Somehow its not okay for women or teenagers who cant take care of a baby to abort yet a loving parent who is willing to do everything to care for their baby regardless of their condition is told to abort? I would rather someone abort early then bring a child up in an abusive or neglagent environment. So you say they can give them up for adoption...there are millions of kids up for adoption and just as many in foster homes. Point is, these children deserve the best even if they have a diagnosis. And i can gaurentee they will be a million times better then what you tell us they will be. I just cant comprehend why that means a child doesnt deserve to have a life.