Welcome to the Foxhole!

Sorry we are so far behind on updates.  Things have been crazy.

My doc didn't want me to stay in the hospital last week since she believes they don't get my food correct (thus, causing seizures) and she was afraid they might give me something med-wise that would be a seizure trigger.  So, we got home very early the next morning from the ER after a bag of saline and a "rescue med."  The praise is that I only had one seizure on Friday and NONE on Saturday!  Praise the LORD!!!  It was amazing to have a day with no seizures or auras.  That hasn't happened since before we started the IVIG treatment.

Saturday was wonderful because we got to take some campers to RYLA (Rotary Youth Leadership Award).  This is a camp that I went to in high school.  I later went back through college on staff at the camp.  The director of this camp is the man that walked me down the aisle to marry my Prince!!  P did very well on the trip.  She was even flirting with the young men that we took to the camp.

When we got back to town, we stopped at Target.  I noticed a bump on my leg, about the size of a half dollar, that appeared out of no where.  By the time I made it back to the car, it was red.  By the time we made it home, it looked like a big bruise.  The concern is that it might be a blood clot. 

Due to the previous issues and the fact that my doc is headed out of town for a week & B's family reunion is coming up soon (and we're driving the full 14 hours), my doc wants to skip this week's IVIG treatment.  She says that it should be fine skipping a treatment because most people undergoing IVIG are doing it bi-weekly, rather than weekly.

So, this week has been very exhausting as you can probably imagine.  I had eight seizures on Wednesday and Thursday ran a close second.  Please pray for guidance on what direction we need to take for treatment.  Pray that the doctors would be able to come up with a solution and that we would see results...NO SEIZURES. 

B finishing this post:

From M's earlier posts, you know that she so desperately wants to feel like P’s mommy and having eight seizures in a day does not allow for her to take care of P.  A great praise is that from your generous support we have been able to have the same person come over each day this last week and provide consistency in care and playtime for P.  This has really been a welcomed blessing and M has been able to at least be guaranteed some good morning time with P.  Additionally, she has been able to get some brief moments with P during the day, but yet our help has truly done an amazing job to work with P and keep her on a consistent schedule.  She won't be able to continue to help for the rest of the Summer, so we are still looking for a full time nanny.