See Saw Life

Another sleepless night.....for Maci and I both on Tuesday. Nothing seemed to be hurting but she napped a couple of times, an hour at the most and didn't go to bed for the last time until a little after 5 am. Rick woke up, unable to sleep at 4 so he held Maci until just before 6. I fell asleep about 5. Maci woke up at 8 for only 15 minutes and then again at 10. I held her and she woke up for good at 11:30.
I am at a loss as to why she won't sleep well, sleep long or go to sleep for several hours at a time, until the wee hours of the morning. I've tried everything possible and I do mean everything!
I thought we'd turned a corner Monday night. I put her in bed at 1:45 am and she slept until almost 11 and would have sleep longer but was accidentally woken up. That night, no such luck.

What I thought may have been her going to sleep for "good" (at 11:58) was only one of her power naps (36 mins). She is now in her bed, smiling about something and turning her Fisher Price jungle aquarium on....seemingly purposeful and not by random accident. She will go weeks...months even, without showing developmental progress and then, it's like over night, suddenly she's doing several new things! It makes my heart happy.

She will now, sometimes, drift off to sleep in her bed. She used to never fall asleep without being held. Now she will nap outside in her stroller for her 3/3:30 afternoon nap and occasionally in her bed at night after we start dialysis.

She's been getting sick more this week. She's always vomited but not like this....I'm going through 5 or more bibs a day and often 2-3 clothing changes. Tonight she's gotten sick twice since after midnight. :(
It's always two steps forward, three steps back. I guess I should be used to it but you DON'T get used to it.
Why couldn't her kidney failure be enough? Why her stomach too? Why her vision issues (to what degree is still unknown)? Why her developmental delays? WHY!!!??? It's so very aggravating. I don't mind that she's not "normal". I just want her to be happy. The stomach problems and reflux and vomiting hurts her. She stiffens up, doesn't always cry, but it has to be uncomfortable for her based on the way she reacts to getting sick and having gas. It breaks my heart. If I could take just part of her pain and discomfort, to allow her more happy moments, I'd do it in a New York minute.

On a positive note, I'm not sure if I mentioned it in the last update but Maci's feeding therapy is going pretty doggone well. She will eat up to about 10 bites of baby food without immediate gagging and will also eat yogurt melts. Since she's not gagging or vomiting over everything put in her mouth we've also been giving her tastes of different stuff. She's tasted creamed corn (hold the kernels) and blackberry jelly this week.

Maci is STILL awake.....in her bed....moving around.....yawning and jabbering. Its 3:10 am. I guess I'll attempt to nap in the chair until she decides she's ready to sleep. My Starbucks has worn clean off.

Pictures from outside 9/26/12:

Maci demonstrates her different expressions of surprise: