She is so normal. Riker has spent a huge part of her life hooked up to tubes. She has spent most of her time in a crib. I cannot believe how normal she is. She is growing like any other 4 month old and she's hitting her milestones. Everything is stacked against her and yet she continues to thrive. She is almost finished her 2nd round of chemo and she is still strong. I am completely in awe of her.
Today I took a big step in making this hospital home. We're not visiting... we've moved in. Even if it is temporary, we've already been here a month and I don't think we've hit the halfway mark. We need to make this home. I brought in Riker's playmat from home and played some of *my* music instead of just the endless tunes cranking out on her swing. It was wonderful. She tires easily... she's on a lot of chemo and anti-nausea meds... but it was great! Honestly, it was one of my better days in the hospital with her.
Two days ago I spent some time on the floor with Riker. We did a little tummy time and she tolerated it but didn't do too well. Today, she rocked the tummy time! Look at that picture! She's developing so quickly :) I laid her down in her boppy pillow today and she sat up! I guess I just assumed we'd miss out on all these little things. Even if Riker survived, I thought her life would be completely on hold while she laid in her crib being pumped full of meds. No matter what happens, she's having a great life. She's doing all the things a child her age should be doing and she's loving it.
She's got all the nurses and doctors completely charmed and is very well cared for when I'm away. Every time I show up at the hospital, someone is holding her or playing with her. It's not a normal life but it's a good life. Riker is happy. Today was another good day. I never imagined what a roller coaster this journey would be!
Riker makes me want to be a better person. She is so strong and inspirational! (She must get that from her mom.) ;-) I can't imagine what a roller coaster ride it must feel like, but the low moments make the high moments that much sweeter. You should be the proudest parents in the world. You clearly have two strong and happy children who, even though they don't realize it yet, are inspirations to so many people around them.
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