Our child is insane. Or incredible. It’s difficult to tell which at this point.
After three days straight of seizures, last night (much to everyone’s surprise) she had no noticeable seizures and no desats. Today, she had some slight facial twitching, but again, her oxygen levels were perfect the entire time. We are baffled. Baffled, but happy to have more unexpected good days.
To add to the insanity, our pediatrician came to check on Lydia a couple days ago and noticed that her liver seemed bigger than it was the last time she was here. This had us concerned because liver failure is a very real possibility and we want to keep Lydia as far away from that experience as possible. Today we had some blood drawn and we were thinking that they were going to come back and tell us that her liver was failing and internal bleeding was imminent. SURPRISE! Her liver is still in great shape and she’s not in danger of liver failure at this point.
To quote our friend Lisa Avery after hearing this news, “I WANT OFF THE ROLLER COASTER!”
We feel the same way.
We’re still feeling hopeful for the open house tomorrow. Of course, I’m feeling a little like we’re setting all of this up like we would set up for a visiting dignitary, but whatever. We really want people to come see her (and us!) and she’s got a really pretty new dress to wear to impress you all. Check back tomorrow for confirmation, but I think we’ll be on.
Our God’s love and compassion for us is overwhelming and we continue to be thankful for each of these days, knowing that each one is a blessing.
In August of 2009 God changed our lives by giving us a beautiful little girl. Lydia was born with Zellweger Syndrome. Lydia went to be with Jesus in April of 2010. This is the story of her life and death, and of our journey through grief in search of healing.
Sending you prayers and good thoughts for a happy open house tomorrow.
ReplyDeleteJen,
ReplyDeleteI don't know you. I can't pretend to know what you are going through. I can only say that I think about you, your family and your precious beautiful little fighter every day. I pray for you, that you have countless good days to love her and let her know your love for her. Your strength is a testament to all things wonderful and powerful and amazing in a mothers heart.