Day By Day

The past couple days have been busy.  I've been spending several hours at the hospital each day with Sophie.  She is doing well.  They are still working on adjusting her medications to hopefully make her as seizure-free as possible for when she comes home.  We don't have a date yet and honestly we don't want a specific one set unless things are looking really good since we've been disappointed so many times in the past weeks.  The neurologist wants her there through the weekend since they are upping the newest medication tomorrow.  She'll want to see how that affects Sophie.  She has a breakthrough seizure here and there...some mild, some not so mild that have to be stopped with IV medication.  What I found out today is that the doctors are comfortable with her having 3-4 small seizures in a day as long as they don't last longer than 5 minutes.  At that point they want them stopped and when we are at home eventually we'll have a prescription for medication to do that if needed.  It's all so scary to me sometimes.  I can watch her have a seizure and it doesn't bring me to tears like it used to, but thinking about managing them at home brings anxiety.  I keep telling the doctors that when she is sent home I just need to know what to do in various circumstances (regarding seizures) and what to do when we don't know what to do!  They are great and have assured me they will prepare us as much as possible.

Mike, Kayla and Madelyn are back home now and doing well.  I spent last night at home since Kayla's kindergarten orientation was in the evening.  It was nice to sleep in my own bed for the first time since Sophie was born, but there was a nagging feeling that something was missing while I was there.  It was one thing when Mike and I stopped by for a couple hours to get mail, pick up things to take back to his parents, etc. but to have the four of us doing normal things there without Sophie just seemed strange.  Even though she's never been home with us, she has become such a daily part of our lives and focus.  I just can't wait to have her there with us even facing the challenges we are.  My prayer continues to be that once she comes home we will have a break from all this madness...some peace and time to just "be" as a family.

Thank you for your continued prayers.  It's a hard life lately, but we trust that we are right where God wants us to be.  One day at a time...