Grace will be eight months old on Thursday. It's officially hard to imagine life without her. We can't remember what we used to do, although I'm sure Hoover remembers that he used to get more attention! I wanted to let you all know how Grace is doing and ask that you continue to keep our family in your prayers.
Kevin and I feel we have survived the crash course in epilepsy and are now beginning to figure out what it is we need to do next. Grace is currently on four anti-convulsant medications (as well as a cadre of other drugs) and we are considering taking her back to the epilepsy center in St. Paul we were sent to upon her initial diagnosis in June. We meet with her neurologist here on Thursday and hope that he will be agreeable to helping us with this step. We worry about burning our bridges with him, but he's seen two other infants with Grace's diagnosis, the group in St. Paul has seen far more. And if we actually do burn our bridges I guess he wasn't the neurologist for us in the first place.
Since her website was last updated Grace has gained several other doctors and a feeding tube. All of this results in an incredibly busy schedule and though I for one have never been amazing at being organized... I have had to kick it in to high gear. We also have a home health nurse, a physical therapist, two occupational therapists, and a teacher to schedule into our days. All of them are greatly impressed with Grace's progress as of late. We are still really behind, but we are able to see that she is learning and growing physically stronger everyday. Because of the medication her immune system is still comprimised and my father is now living with us three days a week to take care of Grace. Everyone at work tends to ask how my dad is hanging in there, before they ask about Grace. They think its amazing he is willing to help, and we think it is too, we couldn't do this without him.
Work has been busy, but my co-workers have been very supportive of my need to duck in and out of the office because of various doctor's appointments and understand that when the neurologist calls and asks to speak with me I need to leave what I am doing to go and talk with him. Because of Grace's immune system we mostly hang out at home, and in the back yard if its nice. Kevin and I got the opportunity to go to Target together last weekend (thank you Mom!) and that was just wonderful. We had so much fun!
Kevin's co-workers have been amazing as well. He isn't looking forward to the holiday season however because it will be such a busy time. There are of course many things to do, and when only one of us is here Grace takes front and center stage... the rest just has to wait.
I have done a lousy job of keeping you all informed of our lives, and hope to do a better job reaching out to you to share our story. I won't pretend it isn't hard, or we don't have bad days.... but we also have wonderful moments, a beautiful daughter, lots to look forward to, stories to read, and the sound of baby sleeping noises in our baby monitor at night - ultimately we have been blessed.
Love - Joy
Grace's Blog has moved to: http://www.hooverspad.com