It was a yuck drive home in nasty rain, but it was so worth it. The doctor showed up in Lillian's room last night around 6pm. He said we could stay or go home, and I said we are out of here. I honestly can't believe some of the crap that happens when we end up in the hospital.
Everyone went to bed last night and I felt so weepy, I told Matt that I knew I should just let it go, but its so hard to know what your child needs and have to try to convince the medical people that I am right. Makes me feel like I cannot care for her properly.
I'm not sure I will consent to or hope for anymore surgery for any good long while to come. No matter how necessary we think it might be. I pray she remains healthy and out of the hospital. I honestly start to wonder if I can really keep sane, seriously. This is the hardest situation I've walked through in my life. It is the WORST feeling to be so helpless. The only comfort is resting in the Lord and remember He has it all even though I don't understand it.
To you ALL, family, friends and prayer warriors I don't even know, I can't even express my gratitude for you prayers, your thoughts and your supportive comments. The angels who arrive at the door with a meal for my family...friends who will help out with the kids so Matt can go to work..you just can't imagine how much it means. Thank you so much.
Lillian had a rough patch through the night, but slept and was better once some pain medicine kicked in. Her breathing sounds terrible while she sleeps, but it seemed less labored later in the morning. I hope that means the inflammation is going down.She is playing around the house and I'm being a big old bump on a log. Think I'll take nap maybe. My mind wants to make cookies but my body is still trying to recoup from 48 hours of mostly awake time. It's amazing what your body can do.
We are already hearing lots of new vocalizations from Lillian and gives me great hope for her communication abilities, I can't hardly wait for her to start back to therapy. I've also noticed she's been able to take drinks without getting choked at all. Amazing. Now, if I could just make the kids understand it wasn't like magic and she will still need to learn how to use the new mechanism in her mouth. :)