Mixed Feelings

Lately I've been feeling overwhelmed and discouraged.  Sophie's been doing better with not as many breakthrough seizures while on three medications.  The doctors seem to have settled on these three for now as the ones we'll go home with.  Over the weekend there was talk of discharging her tomorrow, but today that's been pushed back a bit and I'm actually okay with it.  It's hard admitting that I'm scared to take her home.  There is so much information we have to know about how to handle any seizures that happen (which they will) that is just overwhelms me.  Today while at the hospital I got overloaded with information and it was too much.  The neurologist feels like they have controlled her seizures to the best of their ability for the time being.  She has confidence that we'll handle things well once at home.  The neonatologist, however, would like to observe Sophie for another 48 hours since they are done making medication changes at this point...just to see if we can establish what is normal for her while on this combination of medication.  You'd think this would be disappointing, but it was actually a relief.  Don't get me wrong, I want her home so bad.  I want to be home with Mike and the girls again.  It is such a blessing to have family to stay with so I can be closer to Children's, but it is very hard not having my husband and kids with me each day.  I'm exhausted and so tired of spending every day in the hospital.  But, knowing that they'll be making extra sure in the next couple days that we're all (us and the doctors) comfortable taking her home feels right.  It's going to be scary no matter what.  The challenges with Tuberous Sclerosis are so uncertain and ever changing that it will remain to be seen what our "new normal" will be in our life. 

I hold on to my faith that God will not give us more than we can handle.  Days like today make me really want to question whether we are prepared enough for this.  I feel so helpless most of the time.  But, I am ever hopeful.  There is a purpose for this time in our lives.  God knew His plan for Sophie well before she was born and I believe she is on the perfect path for HER.