Tuesday, November 16, 2010


I am home again. I got home this morning. I have been pretty tired today from all the medications I got over night. They make my head feel like a cotton ball! I tried so hard to not go to sleep today, but ended up taking a long nap. I guess my body needed the rest.
The docs are now hoping that my seizures will be better controlled, but my folks are suspicious. They think I might be ok for a few days with the extra meds I have in my body, but then wondering what will happen next. I guess we simply have to see how the week goes. One rule I have learned is that we need to make one change at a time.
I will also not start on the new med that the doctors were discussing last night. We will leave that for another time. One step at a time.
We also found out that I won't swap my Bi-Pap for a CPAP. I still need the extra pressure from the Bi-Pap to open my lungs as I sleep at night. Mom is bummed, but I am ok. I just wish there were masks fitted for kids in this country. Even the smallest size is too big for my little face! It does bug me.
I am now hoping that we will have a quiet week ahead of us. I know mom will stay on "seizure alert" for a while, and we'll keep you all posted on what's happening.
With me staying home for a longer period of time, we had forgotten about our awesome support system. I can't say what it means with all well wishes we have gotten since yesterday, everyone wondering how I am doing, people asking if they can help with Sarah or anything else we need. The one thing I know is that we couldn't do it without you all cheering for my family and me! I sincerely mean it.
Lots of love to you all,

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