Look who made it outside today!!

Boss and I could go longer stand it, our little girl has not been out of her room in over seven or eight days. I know that doesn't seem like a long time, but this week has been the longest of my life, and I just could not handle one more day knowing she was confined to that darn bed. With the help of godmother Emily, daddy got her into her chair. He took her on a evening walk, and she slept the entire time. Mouth ajar, slight snore. (You know that sleep, like when you fall asleep on an airplane and you only wake up when wheels touch ground. And you're like, oh my gosh was I drooling and snoring that whole time?) It was slightly chilly, a typical southern California night, but the air was so crisp and clean, and I know it felt good on her skin and in her lungs . We even had her off oxygen for 3 1/2 hours! And she did great!!!


I wheeled her back into the house and over to bravery's room and I said, "look who's in her chair!" He took one look at her and gave the cutest, most adorable, sheepish dimple grin, tipping his head down in shy embarrassment of how happy he was. he only replied with, "Amelita. Hi Amelita"

Can she play in your room? "Sure mommy. Let me get her some girls toys." which is kind of a big deal, because bravery is very protective of his room, it's his lair. (You would be amazed, and slightly disgusted, at what I seem to find hiding in there.) he gathered up a pink shield and sword, a my little pony, and a tiny rapunzel doll, placed them all in her lap. At that moment, she opened her eyes and looked right at us both!


All things considered, Amelie had a great day, she was awake alert and had many visitors. Probably too many visitors, but my cousin and my uncle and some little girls wanted to see her and frankly I could not resist. One day, we want all the visitors, and then the next day, we can't have any for whatever reason. It's definitely a day by day type of life. Plus it drains the Hubbs. I get energized by it. When people visit I feel so happy, so fulfilled. But sometimes I can see the look on his face like 'omg. Who is she inviting over now.'


Unfortunately, Amelie's having frequent seizures. She had one this morning that lasted 22 minutes. She had more seizures this evening. I hope this isn't a sign of what's to come.


I am on night shift tonight. I readily admit, I am completely terrified. Hubbs had to give me a no joke peptalk, and actually gave me some fantastic advice. He said, while dutifully rubbing my shoulders and keeping me from hyperventilating, "don't be afraid of what has not even happened."


So here I lay, on couch cushions on the floor next to her bed. It's quite cozy and comfortable, the lavender diffuser blowing in my face, and the digital lights of her machines--oxygen machine, pulse ox, albutirol nebulizer, suction machine, her feeding pump. All staring at me like maniacal little creatures, almost about to snicker, "as soon as you fall asleep we're all going to start beeping! "