In the past seven days, Ruby has had nine of these weird new seizures. Yuck! I was so desperately hoping and praying they would go away and we would never see them again, but that is not the case. We have wrestled with what to do with these new seizures for a little while now. I hate to think about going back on seizure medication, but at this point we may not have another choice. The new seizures are scary to watch since she moans/screams while she is having them and she is so tired after them; it is like torture watching my beautiful baby go through this every day.
So, today I called neurology and we are trying to get a 24 hour video EEG set up at the hospital so we can see what is going on. If we are going to go back on meds, I at least want to know what kind of seizures she is having so we can give her the right medication.
We are discouraged, but my smiley little girl doesn't seem to be too phased by this all. Hopefully, if we do go on meds, we will keep the smile and loose the seizures. As always we appreciate your prayers for wisdom for the tough decisions and for peace that we are doing all we can do for our sweet Ruby.
3 comments:
Little Ruby, I am so sorry that you are having to deal with these seizures. It isn't fair and it isn't right. I'm praying for you and for your mama and daddy as you face whatever lies ahead. Praying for relief and new signs of hope.
Oh Kelly that must be heartwrenching to watch. I am sorry to hear this. I know you have some big decisions to make about meds. Praying for you right now, God give the doctors wisdom, give Kelli and Mark the patience, faith, and strength they need, and especially keep that beautiful baby smiling and happy so that her parents can enjoy her. We know you love her and that you made her just the way you wanted to and that you have a good purpose for this. Allow them to trust you and lean on you through all of this. Amen.
Love to you from Iowa guys.
Hi - I am a friend of Kristi's. We have a daughter who was diagnosed with temporal lobe epilepsy one year ago. Her medication seems to be doing a good job managing the seizures, but you never know with epilepsy. I hope and pray you find the right combination of care and meds for your little Ruby. She is so beautiful, and I know it hurts to see them seize. I thank God for good doctors and good medications!
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