September 12th…such a marker in time for me. It has now been 4 years since my step-brother Donny died. I rememeber that phonecall like it was yesterday…the sound in Donna’s voice…“Donny was murdered”…after those three words everything was different. Losing Donny was the hardest thing I have ever been through and this year I have a whole new perspective on the loss. Sitting in this hospital room with my precious little girl I am realizing that had I never experienced that level of pain I may not be able to handle this. Whoa. Heavy. I feel I should resent the strength it gave me but I know to just embrace it and thank Donny for the gift. He always told me I would be a mother one day and that I would be damn good at it, since Presleys first breath I have done my best to live up to his expectations. With the challenges we have been faced with after the birth of little Riley I have felt pain reminiscent of the days following his death. Pain so deep and all consuming that it takes every bit of you to catch your breath and take another. So many times as I start to slip into that dark place of grief I find myself remembering Donny and I can find peace because Riley is here, even though she is faced with a battle, she is here and that is all that matters. Riley’s condition is simply that…a condition. It is the beginning of her journey and a part of mine. It is sad, I could rattle off a whole list of “I can’t believe’s” and “poor-me’s” and trust me there are days that I want to and days that I do but today will not be one of those days. Today I will kiss Riley a million times because he never got to. I will be thankful for my family because to him that was all that mattered. And I will attempt to be that “damn good mother” he said I’d make.
Now you know my agenda for the day…as for little Riley she’s thinking a whole lotta eat then poop with a little sleep mixed in. At the ripe old age of 2 months she is deciding she’s a bit more interested in what’s going on in the world and spending more of her time awake. Considering her “world” is a 10×10 room I am doing my best to keep it interesting. Her curiosity is growing…I so wish I could take her out of this room and let her see what the world really has to offer. Soon enough. For now she’s stuck with funny facial expressions provided by Mom and a wide variety of musical selections (with limited commercial interruption) courtesy of Pandora. I did move her fish chair and rig her mobile to my snack drawer today giving her a little change of scenary which she greatly appreciated…hey, ya gotta get creative. 😉
As far as her SCID…not much has changed. Her GGT or Gamma-Glutamyl Transpeptidase (yeah..try and pronouce that one) levels are elevated. Translation…one of the levels of liver function that they measure is a bit high. GGT tends to be higher in infants so they’re concern isn’t too strong but it also could be due to infection or a side effect of her new medications. Keeping that in mind and with the need to be very cautious pre-transplant they are going to draw some labs and check for certain infections as well as do an ultrasound on her liver to make sure the bile ducts are doing their job. The Gastrointestinal team (yes there’s a team for that) stopped by yesterday and explained everything in detail with the basic consensus being to err on the side of caution. Other than that we’re still just hanging out waiting for a donor to be secured and then begin conditioning. As I know more and find a minute to type it out I will be sure to update everyone. 😉
Thank you all again for following Riley’s story and providing continued support, it means more to me everyday. xoxo
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