It’s been two weeks that’s felt like two years, but I can honestly report that the fear seems to have become intermittent instead of constantly paralyzing.
Kylie has healed beautifully from her surgery to place her permanent feeding tube. She is now taking her formula (nutrition without phenylalanine) via pump feed every single night. She just had her 5th IV in three weeks started once again today, so it looks like a PICC line is in her near future! She has started complaining of excruciating headaches the past couple of days which makes it impossible for her to focus and articulate her thoughts. I have to admit though, it’s kind of nice to win an argument for a change!
Every morning I get up at 4 a.m. to start her IV fluids and medication before she wakes up and the sickness kicks in to the point of no return. On this particular morning, I open the door quietly as to not wake Lopez. He has taken the night shift to take care of her once again… bless his heart! The faint smell of fresh paint makes me smile. I have had plans to paint her huge bedroom that lays a top my entire three car garage so many times throughout the years and just never got around to it. Maybe because it’s so ridiculously huge! I find myself standing in my daughter’s bedroom and smiling at 4 a.m. in the dark! Gosh, I haven’t done that since SHE was a baby.