Here's where we are...

Hello everyone,
I would first like to thank everyone for all the prayers and well wishes you have sent our way. Our little girl only knows 10 people (not including her doctors), but she has people praying for her all over the world. We are so incredibly grateful for the love and support.

Lily came home on Thursday, December 10th in the evening. She is doing well at home. We have had a little gas issue and have been trying out a different formula, but besides that she is doing great. They sent her home with her medication, Keppra, to control the seizures and that seems to be working. She is also on a pretty strict feeding schedule, but that is perfectly fine. We like a routine around here.

They still have metabolic tests out on Lily, so they have not yet ruled everything out. They should be getting those tests in the next few weeks. If those come back negative, then the neuro team said it may be a type of newborn epilepsy. She has an appointment in the neuro clinic in March so they can see how she is doing.


They have ruled out so many different types of things. The other day, Brandon and I were watching the doctors look for a certain chromosome test on the computer and saw the list of tests they had run. It was huge and they all came back normal, so that is really reassuring. Things could have been so much worse. I just count my blessings when I think of how lucky we are. I mean, we may be home without a diagnosis, but we know for sure it isn't a brain tumor, or cyst in the brain, or any other HUGE issue. Things could be so much worse....Praise God that they are not.

I can't believe Christmas is coming up so quick. I knew it was just going to fly by once Lily got here, but sheesh! So much to do. We go to Lily's 2 wk check-up on Monday and there we will ask him what he thinks about driving to Louisiana for the holidays. Hopefully, we will be able to, but her health is priority number one. If we can't...oh well. The last thing we want is to get to Louisiana, not have a plan in place and have something happen.

Please keep my little redheaded angel in your thoughts and prayers. Also, if you don't mind, say a little prayer for her mom and dad. Paranoia is running rampid around here and a little peace of mind would be nice!

Take care!