I have woken up everyday since Tuesday wondering if this is all real. Not being in the hospital…that I know is real, that’s the reality that I am used to. The leaving part. Is that real? Is it actually happening? Keep in mind when we got here over 5 months ago we were unsure if she would ever be coming home, we didn’t care how long it took we just wanted our girl to make it. And she has. She’s made it. I am sure she will continue to make our lives interesting. Her little body may throw some curve balls but we have proved to each other that we can get through whatever may come. She has taken her time in this place, made sure to get as many kinks out of her faulty insides as possible. Every other time that they’ve spoken of discharge I’ve been consumed with panic, shear terror in fact. The thought of taking her home just didn’t seem safe. It does now. I always hoped that I would feel it was right when the time came, that I wouldn’t be questioning it or questioning her. It feels right, no questioning…I’m still nervous (duh) but I’m not unsure. Her body says she’s ready and I trust her.

Now let me tell you, the way this little cricket has been acting the past few days…she is BEYOND ready. Girl. Wants. To. Move. Call me crazy but she has been a handful since the doctors gave me the news. Don’t get me wrong she is still sweet as ever but she is bored out of her mind and for the first time making sure I know it. I can’t blame her, this room is beyond boring. She’s outgrown her vibrating chair so there goes one of our time-killing options. She can push herself across the room in her little walking chair but then looks at me with a “if you could kindly open this door and let me the hell out, I’ve got places to be” look. Along with her 6 & 9 month jammies little Miss Riley is busting at the seams for more  space. I simply cannot wait to re-introduce her to the endless entertainment that is PRESLEY. I’m betting she will be crawling within days of being home simply to catch up with the flash of curls running around. Presley never stops talking so bring on the jabber and if Riley thinks I’m funny…oh man…just wait. I can already hear the giggles, squeals and bouts of hiccups that will come from their interactions.

Riley had another eye exam yeterday just to be sure that the CMV continued to mind it’s own business and leave her retinas alone. I can promise you she will not miss having her eyes dialted monthly but she is fond of the fancy head gear and lights they use. Everything checked out perfectly so we’ve got a clean bill there going out the door. Doctors will send another function study on Tuesday just to give us a second point of reference since being off immuno-suppresants. Fingers crossed that she makes another big jump! I’ll take the 21% but every number up is just that much more security.


I’m heading home today to hang with Presley and probably panic about all that I “need” to get done. For those who have been pregnant, remember the last week of your third trimester? Cleaning things that were clean, organzing random items like teddy bears, waking at 3 a.m. and wishing with all your heart and soul that Target was open because you HAD TO HAVE more diaper genie refills immediately or the world would end. Uh-huh. Yup I’m there…all over again. My lists are in order…number #1 task…maintain sanity, all else will fall in to place.

Thank you so much to those who have donated and purchased from our wish list, you have no clue how much it helps. Everything marked off is one last trip to the store we have to squeeze in and one less dollar we have to squeeze out. Thank you. Thank you. Thank you.

For those who would like to donate or help in any way please follow the links below…as always email me with any questions. Rileyjanebrown@gmail.com

Amazon Wish List: http://www.amazon.com/gp/registry/wishlist/37IX0FPKGMSST

GoFund Me: http://www.gofundme.com/3x0iig

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