July 8

We've officially been home for two weeks. Freedom from hospitals has been a blessing. We are significantly quicker at administering Claire's medications and other needs in a timely manner compared to waiting on nurses to get permission to do virtually anything. We've been able to take Claire on several small outings, which is tremendously rewarding for us.

Let me thank those of you from Morning Star Church and South Salem High School who have prepared meals for us every other night since we've been home. It really does relieve a burden. Thanks to Mary Lucas for coordinating that effort. And thank you again to South Salem High School Teachers for spending a day at our home and cleaning up our much ignored and overgrown yard prior to our arrival back home. Rebecca's workplace, Bank of the Cascades is conducting a Pancake feed on July 31 at the Applebee's in South Salem as a fundraiser for Claire's medical expenses. What wonderful blessing to live in a community so willing to reach out and help. We love you all and cannot thank you enough.

Claire has not really improved since being home. Last Tuesday Claire had her record seizure day at 65. It would likely have been easier to count the times she was not seizing. That was the end of a six day stretch where I couldn't say we really saw our daughter. When she was not seizing, we had her very sedated. That afternoon I spent speaking with the Epileptologist at Doernbecher's and we ended up nearly maxing out one of Claire medications. The move seems to have been effective, because Claire has had fewer seizures and fewer doses of her rescue meds. She has also had several long stretches of behaving like a normal baby. Hopefully this trend continues for awhile and we do not have to adjust her meds further.

Moving forward, we are still waiting to hear back from the List Serve and the Mayo Clinic in Rochester, MN. If I get any news from either, I will post immediately.