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.





















Monday, June 25, 2012

New research and therapy

Since last post, Arianna has been getting better with the reflux. We say a gastroenterologist a few days ago who put her on medicine to help her pass her bowels. This is apparently a common issue with Schizencephaly due to muscle tone. It seems to be helping her, she's not aching her back as much. She also up'd her dose of Zantac to three times a day.
 Next monday we will be returning to CHOP (yay!) for her genetic testing results. I cant really take that appointment seriously considering they don't even know if it is genetic. But possibly it will show if there is a genetic mutation that happened. Im not sure if I would rather be told it was genetic or environmental.  I stressed a lot and still do often about how it happened and if we hadn't been living in Virginia i it would had happened. Trying to not think about it and take everyone's advice to stop thinking about it and just concentrate on the now and doing what's best for her. Which I do but the guilt is there. And I been so scared to get pregnant again that it's effecting our relationship sexually.
 My moods about it are so back and forth. Im so depressed sometimes and sometimes I think of the fact that it is amazing I didn't get pregnant before I did. That the 6 months we were in VA I did get pregnant. Leading me to believe it really did happen for a reason. And I do have to count my blessing and I am sure there are other parents of schiz kids who are probably thinking I should be more thankful that Arianna isn't dealing with the seizures, the braces, the 100 different medicines. Which I am, but like I said the anxiety comes and goes.
 If you were to read up on it, almost all articles say that they will not live the their second decade of life. Now there are some adults with schiz that have their own families although I believe they are only effected uni-laterly where Arianna has it bi-laterly. The oldest children I know of I think is around 15. Its scary, but I also have to keep in mind there is really no research being done and most of these articles are from a few years back. Ari has already proven them wrong and I am hopeful it will continue that way.
 This is an interesting article about the statistics of where Schiz is mostly found:
http://www.textmed.com/disease/schizencephaly.htm

There is also a ton of research being done with stem cells:

http://www.news9.com/story/17588969/new-stem-cell-found-in-the-brain?clienttype=printable

http://www.returninghope.com/stem-cell-therapy-for-traumatic-brain-injury.html

http://www.youtube.com/watch?v=DTDI8H2X4dU

http://www.naturalnews.com/027849_amino_acids_brain_damage.html

http://www.cnsfoundation.org/site/PageServer?pagename=rch_braincells_new

Thank you Trish for the links.

Its a lot to read about but this is what I spend my time doing. Along with taking care of miss.

 When Arianna was about 2 months old I looked into the Anet Baniel Method because I heard great things about it not only from Schiz parents but with other disabilities as well. We had her see an ABM therapist and after only 4 sessions I seen a great improvement. Arianna has been able to sit up better unassisted, rolling over to her belly and playing there, and using her right hand more. We will no longer be seeing early intervention because it contradicts what ABM is doing. Its a wonderful program and I recommend it to anyone. This is Katherine O'Neil's website. She is so great with Arianna.
http://www.evergreenintegration.com/

 I did also start a fundraiser for Arianna to help pay for the therapy. It has been hard being a stay at home mom and trying to cover everything financially. Even though this therapy is out of pocket and EI was free, its completely worth it. Im going to do everything I can for her no matter what it takes.

http://www.giveforward.com/abetterfutureforarianna




Posted by at

No comments:

Post a Comment

Subscribe to: Post Comments (Atom)