Pushing my buttons...

Meet the newest Who in Who-ville

Anabelle puts this suit on and swims the length of the pool by herself the whole time we're there. And then she takes a 3 hour nap. It rocks.

MaShay is so cool.

Well the good news is I have learned to sleep sitting up since Anabelle broke my hospital bed into the upright position. She did this by pushing all the buttons on the bed about a thousand times. I pushed them all about a hundred times and then gave up trying to fix it. Now I don't have to struggle thru anymore sunday school lessons, I can just take a discreet little siesta sitting straight up. Excellent.

The neurologist said Lila's EEG and MRI were normal. She did order some tests that check for neuro-muscular disorders because she felt that Lila's tone is not what it should be (tone meaning the amount of muscular resistance she offers). The tests are specialized and take about a month to come back. These test results are the only ones outstanding-everything seems to be checking out ok. Which is a catch 22, we don't want them to find anything, but we also don't like having the "mystery baby". They have started her on two medications for reflux and I think maybe it is making a difference. It's early to say but in the last day and a half her episodes have been both less frequent and less intense. She was having them 6-8 times a day and she had only about 4 yesterday. Also they turned the warmer down to 25% and she has been able to hold body temp since yesterday morning. I am so excited about that. We are of course still hoping and praying that she will just mature out of whatever is causing these struggles.

Since it has become apparent that we will be here a while the doctor urged me to get out of the hospital. I'm not sure if she said that for the sake of my sanity or hers (it's possible that she hears Anabelle scream -singing "Tinkle tinkle yittle dars" all day and night). Either way I have gone home for a few hours the last few days to swim with Anabelle and try to establish some normalcy for her. It has been good for all of us. We are so grateful to Braden's sister MaShay who came last week to help with Anabelle.

We continue to feel so blessed and overwhelmed by love & support. We especially appreciate the prayers on our behalf and want you to know that I literally feel strengthened and carried by them.