Kevin & I didn't get to spend too much time at the hospital today, which of course, I feel guilty about. After church, Amanda's nap, etc. it was 4:30 before we got there. The nurse reported that he's had a great day! He's waking up just before feeding time & showing signs that he's hungry. She caught him moving his hands to his mouth & making some sucking gestures too! Since his next feeding was at 5:00, I worked with him using the pacifier; it took a little while to get him to open his mouth & once I had it in there, he did chomp on it a few times...nothing spectacular, but at least a start.
They also lowered his oxygen level this morning to .3 liters & he was tolerating the lower dose just fine! Here's hoping we can get him weaned off of that soon. Aside from that, he had an uneventful, quiet day.
Tomorrow morning the Dr on duty will be calling the lab to find out if they can run the test for Coffin-Lowry Syndrome at the same time they do the Hyperexplexia test. If all goes well, we'll meet the 1:00pm deadline tomorrow.
I had to force myself to go to church today, 1) because I was really tired & 2) because I'm still struggling with leaning on God right now. When I arrived, I found myself trying to avoid people I knew just so I didn't have to face the fact that I wasn't pregnant anymore, let alone hearing the next question "where's the baby?". After a failed attempt to avoid somebody, I realized I can't hide from those that are trying to reach out.
As we started to worship, the tears began to fall. "Show me the path. Give me direction, the doctors wisdom & Jacob the strength to get passed this. It doesn't matter if he's not perfect, he's just as you made him. All I ask is that you allow him to stay on earth with us & teach all of us the patience we'll need to care for him." This was my prayer.
A few minutes into worship, one of the singers made her way to the front of the stage & begins to tell a story, a story of her now 28 year old daughter, who is autistic. She went on to share how much God has changed their lives with the ups & downs of learning how to deal with an autistic child. One who can't speak, knows very little sign language, and uses body language to communicate most of the time. As I listened to her tell this story, I sobbed. I knew then, this is why I'm at church today. God wanted me there to hear this.
It's amazing how He uses other people to remind us to lean on Him, even when times are rough & we don't understand the why's, God knows what He's doing & He has some good to come out of this, even if we can't see it now.
Visitors: Kathy Beelmann; Grandma & Grandpa
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