Grace is crying in her crib behind me, still wide awake and 10:25 pm. The medicine she is on really makes her wired! I'll have to rock her soon... this parenting for sleep thing is extremely complicated and we never know if we are doing the right thing.
Grace had two clusters of seizures today both around 4 minutes... we had been in the 8 to 10 minute range so this has been a relief. We leave for St. Paul Sunday afternoon, her appt. with the epileptologist is at 2 and there is an EEG scheduled for noon.
She has yet to spike a fever or throw up a lot so I am hopeful that we will really be able to go off of the steroids. I heard Kevin talking to her this morning about all the places he wants to take her once she is able to join the world. I have been thinking about that a lot as well. (Heather and Drue we are coming to see you!)
Grace is continuing to become stronger, more active, seems to be figuring some things out. this sleep thing right now is HUGE though. We have stopped bottle feeding as it upsets her way too much. My motherly instinct is to feed --- and while I would love to have that time holding her and having her drink out of a bottle, it's not pleasant for her or for me.
I never knew that parenting could make you feel so helpless. But I think that Kevin and I are being very strong....
Joy
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