Princess Sophia
My name is Sophia Grace Crawford and I am one year old. I have been diagnosed with Batten Disease, a rare and incurable genetic disease that will cause me to lose the little sight that I have, worsening seizures, loss of the ability to move my arms and legs, and will ultimately leave me bed ridden. And it is always fatal. I will leave this world within the next two years but I don't know exactly when. Until then, my Mommy and Daddy want to help me bring awareness to Batten Disease. Please come on this journey with me so that, together, we can celebrate each day that I have left!
Double ear infection
I am soooo sick! My doctor said "poor baby" and she was talking about me! :) My pediatrician gave my mommy pills for my infection but then I kept coughing and crying and just didn't feel any better. So my mommy said she was mad that her baby (me again) was still sick so she called the doctor again to get some different medicine. But before we could even go to that drive thru where the lady hands you pills, Dr. Hallinan called and said she was calling the doctor so I could just get a shot! I was not too happy about this but mommy said sometimes things that hurt end up making us feel better. So I got the shot! Owwwwee! And, I have to get another one today, and Wednesday! I tried to tell mommy that I wanted to think this decision through again but mommy wasn't in the best of moods so I let it ride! The shot is really for meningitis but Dr. Hallinan said that I am tough and I can handle it...that's right! Super baby right here---as if you didn't already know! :)
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She ia super girl, She has been through more at this young than the average adult will go through in a life time.
ReplyDeletePraying really hard for you little Sophia, my name is Debbie and I am a friend of your great aunt Kathy.
ReplyDeleteSophia, it's Aunt K! I can't stop thinking about you, and your mommy and daddy! I am so sorry that you have a double ear infection, and that you are in so much pain. I also hate that you are getting all those shots, but they will make you feel better. They only hurt for a second. G-ma is there now to give your mom and dad some rest...so just lay back in your "nap nanny" and rest! Madison, Mackenzie, and I will be there to see you on Friday--hope you feel like playing!! :) I love you and miss you so much!
ReplyDeleteLove this! Thanks aunt K. Can't wait to see you and my sweet nieces on Friday.
DeleteBless your heart! I pray you get to feeling better real quick so you can enjoy the visit from your G-ma. G-ma's always make things better! Love you!
ReplyDeleteSophia, what a strong baby you are! Its hard to think about all you have gone through in less than a year. Do you know how special you are? God created you perfectly as you are because he has important things for you to do that not just anyone can do. You are changing people, Sophia, and bringing them closer together. I mean, G-Ma, is driving herself halfway to Lex these days. You did that! Your mom, Aunt K, and I talk and see each other more often, you did that! Aunt Tracy is on Facebook, you did that! Many,many people are praying more to God these days, you did that! All of my kisses, words, and our snuggle times will never be able to express how much you mean to me. I love you, Sophia Grace!
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