Tuesday, March 12, 2013
My overdue update
A change in life has really made me do allot of deep thinking. After being in Florida for over two months now certain things have come up as a challenge for me in getting the necessary help and care for Emma and not as good as I thought it would be prior to coming here. The best thing that has come out of this is getting into Shriners and has lead me into the right direction but I find my self learning a new system all over right when I thought I had got it. Emma on the other hand was off tract just due to selling our house and moving. She is now doing good a headed back in the right direction. We have gotten her new HKAFO's which are a work in progress but defiantly going in the right direction and the difference is amazing. I did feel I got some what of a blow when I was told she would need these braces because we have been told in the pass that she doesn't need anything like it and she would build the strength up. What I have come to realize is she has been working on this for about a year and not allot of progress but she sure as heck would try, but it was always a very good outlook and keep trying. Coming to Shriners I had an extensive conversation with the Orthopedic doctor and the Clinic doctor about this and they said she could very well always have to wear a device like this to walk (meaning HKAFO's)which at that moment felt like a crushing blow because here I always thought that her prognosis was better then it was. So here I was being negative the whole two weeks waiting for her HKAFO's and her appointment comes time to get them we put them on and for the very first time she was standing so tall and strong. She was barely even hanging on, and I didn't even realize until that moment how tall she actually was. But even more importantly how wrong I was about being upset about something that felt so negative had actually turned into something so positive. I have held in so much hurt and pain after finding out about the study that we participated in and how a you can have in utero surgery now and how it really makes such a difference. Wishing I could go back into time and change our outcome. I know Nick and I did everything we could and everything else wasn't in our control but now learning that what's really important is staying positive for Emma and not look back at the past but focus on our future and now that everything will work out all in the end. Now with all that being said I have not given up hope and now how there are many surprising things to come from my little spit fire who is bound and determined to have it her way. http://youtu.be/v018ruHBzGY We did just go to Shriners yesterday she was fitted for a wheelchair this will help keep her in her new braces all day when she isn't walking around. Surprisingly enough I am excited because this will give her more freedom in places she cant go and that means this Mama doesn't have to carry her every where. She is extremely thrilled to say the least she tried out the Zippie Zone and moved around like she had done it before with a giant smile on her face..so they where nice enough to give us a loner mean while. To her much excitement. Payton thinks its the coolest thing ever and was excited because now she can go out side and play with him (ahh to cute). We are all doing great and loving our new life in paradise!