Just as things were looking a little bleak after today's evaluation, we were visited via phone, email and blog by two of the "angels" of the AMC support, Ani and Tracey. They have willingly and unselfishly provided amazing resources and greatly appreciated encouragement when we needed it most. They are both so willing to share their own journey to help newbies like us!!
Thank you for all you do!!
awww so sweet! Wish I could reach out and HUG you all. Hang in there sweet family. There is LIGHT at the end of the tunnel. 1st year is the HARDEST and MOST critical. But you are taking the right steps for Analise! As I have said before she is so very lucky to have such a great support system researching all the options out there in this AMC world :-) We will be here for the duration of your journey with your precious Analise.....
ReplyDeleteIt broke my heart to hear of your visit with Dr. Hurley, it seems that her information has many contradiction in comparison to the professional opinions of the top specialist that saw Analise at Kaiser Sunset. DO NOT loose your faith, go forward, seek the specialist in Philadelphia and get a second, third opinion, whatever it takes. She needs to see a doctor that is not only clinically knowledgeable, but that is a visionary and has a strong faith system in place! Take her to Shiners in Philadelphia, let the best in the field evaluate her now that she is so young and moldable, as she gets older, it will be harder. You also need to have a second opinion on the casting,(THIS IS HUGE) make sure they are casting her correctly for her particular problem. I know this is overwhelming right now and you are being bombarded from all side with opinions and advise, including mine, but I am the kind of person that will risk everything for what I believe in and I know you are the same. And I know you believe your baby can do better that what this doctor has visualized for her...Remember, you guys are not only her arms and legs for now, but also her voice! Get to Shiners, see the best in the field and that way you can lay your head down at night and say, this is what Analise would have done for herself if she were able to.....I love you all and if I can do anything for you, please let me know! Hell, I'll go to Philadelphia with you! :-). I can only post as Anonymous! But this is your Aunt Anaivett
ReplyDeleteErik, Dawn, and Analise,
ReplyDeleteWe (the Spragues-Joe, Jenna, Dylan, and Courtney (Analise's former neighbor in the NICU) are thinking about you and wishing you the best each and every day. Our girls have already shown how tough they are and that life does have a special purpose for them and us as well. Please appreciate every moment that you spend with your beautiful daughter. Courtney will likely not come home for another 1-2 weeks and I miss her so much on those days when I am not by her side (working in the office). Life truly is a gift and Analise will tell you that herself one day. Please continue to be strong and know that you are fortunate to be her Mommy and Daddy :-)
What a wonderful post by The Sprague's! xo
ReplyDeleteI was in to see my Doctor last week, and I told him of Analise's condition, he told me that he has a very good friend who has a lovely daughter, also born with the same condition (actually, maybe, more severe..she cannot move her arms or legs) at any rate, this remarkable woman will soon graduate from Law School..... She's having a wonderful, loving and enriching life.....as WILL your Analise! XOXO