Taking things one day at a time

It's 12:34 am and we are in the hospital I am watching my baby girl to see if she is going to have any seizures tonight. I have no outlet but scrabble on my iPhone and writing this blog.

We were admitted on Tuesday because Piper had her first seizure. We stayed until thursday so testing could be done. She has had an MRI and EEG and both had abnormal results.We expected the tests to be abnormal due to her brain condition. She has had a total of 19 seizures since tuesday. It is absolutely heart breaking every time. She was given a medicine to prevent the seizures and it worked for a couple days so we were sent home on Thursday. We got home and tried to relax a little with family. Friday morning she had three more short ones. We hoped her morning dose would help. Friday afternoon she had three more. We came back to the emergency room and were admitted again. They increased her dose to the highest amount for her body weight in hopes that they would be controlled. She had three more today. They are adding another medicine to what she is already taking. They gave her both of her meds tonight and she threw up everywhere. We dont know how much she got so there is a good chance she will have seizures through out the night. They will try again in the morning to see if the new meds work.

As I was writing this, she had another. My heart is heavy and my mind, body and spirit are tired. I pray for strength, healing and faith. I have never had to deal with this kind of stress and anxiety before. I am trying to give my worry to God but it is easier said than done. I'm not sure I will ever feel like myself again.

We are so very thankful in this time of sadness and fear. God has given is amazing family and friends who encourage us and lift us up. We could not do it without this support. Justin and I make a great team and this has brought strength to our relationship even though we barely get a second together. Our lives are changed forever and it is scary. We just pray continuously for Piper. She is such a wonderful blessing and we love her so very much.

I will continue to keep everyone updated. We don't know how long we will be at the hospital but I imagine it will be awhile.