This is quite possibly the most long overdue update EVER…sorry about that. Back when our days consisted of eat, sleep, poop, repeat it was a little easier to plop down in front of my computer. Once that curiosity kicks in and they realize they no longer require as many daytime snoozes all those free moments just go right out the window. I remember when Presley had that epiphany and looking back now I can’t help but smile at how “tricky” I thought it was keeping her entertained all day. We had the whole world to explore. I could lug her around with me whereever I wanted to go and while it may have been a pain, it was an option. Back then I never would have imagined having a baby and those simple outings to the store or even for a walk not being an option. Keeping Riley occupied, moving, active and not bored out of her little mind is becoming more challenging as the days pass. It is constant…there are no stroller rides, long drives, or even baby bjorn strolls around the mall. It’s just us, a crib, a mat, a vibrating chair and a princess seat…over and over and over. Think stir crazy with a big ass spoon and a little bitty bowl.

Riley did have an “outing” of sorts over the weekend. She moved rooms…that’s as big as her world gets folks…a quick jaunt down the hall in the arms of a nurse with her whole body wrapped in blankets. The move happened when I was at home…my poor mother in law and mom had the pleasure of washing and sanitizing EVERYTHING that was in the old room and bagging it prior to the transfer. So sorry and thank you. 😉 My Mom snapped a photo of Riley right as she left the old room and the look on her face is priceless…her eyes are so wide. For just a moment she got to see what that elusive hallway beyond her door looked like and then it was back under the blanket. Now the reason for the move is just as exciting (ok, maybe more) as the improved view and more comfortable bed…she no longer has the Rotavirus so we had to clear out of the room to limit further exposure. That was the lovely “poop soup” virus I talked about before…now clearly I’m happy that the gifts in her pants are back to a normal consistency but I’m over the moon that she got rid of the virus. There’s no antibiotic for it and so her body…her little immune-systemless body was able to fight it. Yippee! When the first test came back negative the doctors weren’t all that convinced but the retest and the recent lack of symptoms confirmed that it is indeed gone. For most it is a simple little bug that runs havoc on the tummy for about 24 hours and then makes its way to the next, for Riley it was closer to a month but she beat it nonetheless. Go Riley Go!

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With this development the doctors are hopeful that her T-cell function has improved. They sent a function test out last Monday which we expect results from tomorrow at the very earliest but could also be next week. This is the first function test we have sent since stopping the Gancivlovir (a drug that with a immune suppression side affect) so the results of this will be very telling. There is the potential for some drastic improvement or things may come back the same or minimally improved. I can say that this is the first time I haven’t had a gut feeling about the results…all the other times I’ve just known that the function wasn’t there, I’m hoping that my lack of feeling on it means there’s improvement. Stay tuned. Her CMV has continued to come back undetected and all of her counts are looking really good. She is the star eater here at the hospital. Kid. Can. Chow. She’s thriving beautifully weighing in at just over 18 lbs and still smiling around the clock. Even in the middle of the night she’ll open her eyes, look over at me through the bars of her crib, grin from ear to ear, let out a big ol’ cooo/squeal and then go right back to sleep. While it may be crazy adorable I don’t exactly possess the ability to enter right back into dreamland like she does…little stinker. I will do my best to update when we recieve the function results…all apendages crossed that it’s good news. We deserve it and all, right?

Thank you so much to everyone who has continued to stay in touch, offer support, visit, make meals, donate, etc…5 months later and it still makes the days a little sweeter. xoxo

 

For those who have or would like to help in any way…both donations and/or items purchased from our Amazon wish list have been BEYOND appreciated. Slowly but surely our cabinets are becoming stocked with cleaning products and baby supplies. Every dollar, every package truly means the world and lightens the load we’ve been lifting for months. Thank you all.

 

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

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

2 thoughts on “

  1. So happy to hear Riley’s doing so well! Anxious to see how your function studies come back…YES, you do deserve GREAT results!!!
    Love,
    Heather Smith
    SCID, Angles for Life Foundation

  2. As I read this tears threatened to fill my eyes. I cannot begin to even fathom what it has been like. I do know this. I look at Riley’s little face, it is that of an Angel and know as difficult as things have been, you have been Blessed. Hang in there Alissa thoughts and prayers are sent your way.

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