6 months, 1 week, 4 days since diagnosis
Riker is 10 months old today. Weighing in at 18lbs, she's as large as her sister was at a year old. She's big, beautiful, and healthy. Amazing.
Every day she is stronger and more normal. She enjoys watching her sister and eagerly waits for the breaks I take from work when I come downstairs to hold her and talk to her. I don't see the tubes that come from her chest and belly and she never noticed them to begin with. I'm finding it pleasant and surprising - I have a normal baby.
We are closer every day to cresting the 100 day hill. After 100 days, we'll start to wean her off all of the medication and then we watch. Hopefully she'll even become more normal... and we'll all get back to our lives.
My husband and I went to look at more houses. I think we're ready to walk away from the first. There's actually a lot out on the market at very affordable prices. We're feeling hopeful again that we'll have a home to call our own soon. Normal life is so close we can taste it. We're exhausted and ready for this to be over but we can't quit now.