a joyful day. (glor update 7.3.12)
If yesterday was about sustaining, I feel like today was about God-given joy.
Glory just woke up over the top joyful. If you know her, you know she is INFECTIOUS. She just makes you happy when she's happy. Her nurses were absolutely delighting in her all day - making her special things and trying to sneak her ice cream round the clock.
We got her EEG done around noon and met with her new neurologist. This was so encouraging because we saw he wanted to push for answers just as much as we did. He ordered a catscan and let us know that he wanted her home as quick as possible, but with as much information as possible.
We were really, really, really hoping for answers and we got some.
And not big scary monster answers, which is a blessing I still can't quite take in!
Essentially, the scar tissue that was bothering Glory a year ago is still really bothering her. It's not something we can treat or fix, but we are going to go back to some aggressive medication to keep her from having these violent wake-to-sleep seizures. They still don't see any epileptic brain activity and they couldn't induce a seizure today which makes us feel so much more confident that she doesn't have any normal form of epilepsy - but she does need protection from these seizures.
So, we're going to do all we can to protect her!
I want to tell you some joyful things from today:
- on Sunday night before I went to bed, I was praying and just asking the Lord for help. I knew that my heart was distracted from my kiddos and I just needed to be pulled back in to really see them and hear them all the time. I'm so joyful for these days I've had with her - to see her and hear her heart. She is such a joy. And I'm so thankful to have two boys that I LONG to see tomorrow. I want to cuddle with them for 3 days straight.
- I'm so thankful for our Gospel Community here. Our friends who have selflessly watched the boys, offered to bring food, and a few of Glory's precious friends & their mamas who came by today. She was supposed to go to a friend's birthday tea party today and obviously, couldn't make it. Her sweet friends brought the party to her! Decorations, treats, and even a gift.
- I'm super thankful for our nurses today. They loved all three of us very hard and spoiled us rotten.
- I'm incredibly thankful for my husband. He is a rock and a protector. When he left tonight to go be with the boys, he gave every nurse on the hall his cell phone number with strict instructions to watch Glory and I. He's only left our side to serve us or the boys in the last 2 days.
- I'm super thankful for my online & far away friends. Sometimes I feel like such a weirdo to have an "online life" and then something like this happens and I'm blown away with how uplifting that community is. Thank you.
Just thankful & joyful over here.
Gonna go stare at my girl while she sleeps and get excited about hugging my boys tomorrow. Thank you, thank you for your prayers and encouragement.