Her Rare Life

Our life, our experience, our history, about my daughter with a rare chromosome disorder. She is missing a small portion of her 8th chromosome, which is called a deletion. She also has a small part of XP added to that. Her karotype or diagnosis is deletion 8p23.3 with extra xp22.2 to the terminal deletion (a new chromosome test summer 2011 changed her karotype to deletion 8p23.2 with extra xp 22.12, essentially meaning more missing chromosome 8 and more added xp). #herrarelife

Thursday, April 21, 2011

Change

As usual Schuyler's monster blog hits home as we encounter similar issues. IEPs, feeling of reality and hope. Not knowing is so hard. Not knowing what's best and when to fight so damn hard so you don't ever feel like you didn't give it your best. Can't people understand that? I can see how hard it would be for someone to try and imagine being in my shoes. Shoot having a typical child like Shelbi is a piece of cake. Yes I know times will be different when she's a teenager, but I'm talking these years, now, little worry for her because she learns everything this first time. How will she feel when she realizes Sadie has a disability? She is an amazing sister, almost a little mother to her. So in times like these, all I can ask is wouldn't any mother fight for the love and acceptance of her children...YES

http://belovedmonsterandme.blogspot.com/

http://schuylersmonster.blogspot.com/