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, April 27, 2012

2 week notice

After a rough week of having a sick baby and in and out of the doctor's office and ER, Jesse and I decided its best that I stay home with Ari. I had the privelage of putting my 2 weeks notice in this morning.
 We have been discussing this as an option probably since I came back from maternity leave. We were weighing the pros and cons, going over finances on paper and in our heads, calculating everything we need and the extra to play with. I think we have come to the realazation that if its in the best interest for her, nothing else matters. We can go without as long as she has what she needs and is cared for the best she can be.
 This will be a whole new experience I am both looking forward to and a little uneasy about. I am hoping I am able to find something to bring in more income at home down the road. But I know it is essential I am home with her. Its only a matter of time before work lets me go, might as well put the word in first. Probably looks better then getting fired.
 Since Sunday night Ari hasnt been feeling too great. She slept basically all day, would wake up to eat about 1-2oz, sleep 2-3 hours. Her head turns blotchy when she eats from the bottle. Around her eyes and forhead gets red patches. She was choking on her bottle periodically as well. Her pediatrician said she probably has reflux. Im not sure I buy it. She really doesnt spit up that often, unless shes not burped frequently. She doesnt cry when she eats. Shes 6 months, thats usually about resolved by this time if babies do have it. Tuesday she woke up with her right eye swollen, red, and gooey. Looked like someone punched her in the eye. Her pedi wouldnt see her because he just seen her monday so it couldn't possibly be pink eye. Not sure I understand the logic in that. Also said it could be a cold working its way out. Umm, okay but just yesterday you said she wasnt congested at all, now shes getting rid of the cold she never had...? We took her to the ER wednesday because of her choking when eating. She had hardly eaten that day and of course I was concern. Well we waited 4 hours to be told she may be getting a cold. The discharge summary was how to take care of your irratble infant. And I think the diagnosis was overreactive mom. I was extremely frustrated but too tired to argue. Ari was asleep, it was 6 hours past her bed time, and Jesse and I could hardly keep our eyes open. I have a nuero appointment in 2 weeks. I will be asking if he recommends any pediatricians that have experience with SN children. I realize there wont be any for her DX, but at least have some other understanding other then chalking everything up to a common cold. And yes, maybe I can be overreactive, but isnt that a mother's job?
 I decided not to give her the reflux medicine. At least until consulting the neurologist. Physical thereapy seen her yesterday. Same things as it was 2 weeks ago. Still havnt heard from the occupational therapist that was suppose to set up an appt by now.  I will say she is doing better with keeping her right hand open, as well as grabbing things with it. She does need her legs stretched as well. She cant get her legs up to her head like most babies to to grab their feet. Shes not really trying to sit up yet. She can for a few seconds when she sits on our laps.On the floor she goes right over. So trying to get her to be able to prop herself up. She is scooting on her belly. Its a step in the right direction to crawling.
 I have a few opiononated things I need to get out too,  but that will be later on when I have time at home :)

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