Claire's move to OHSU, May 6

We hit a dead end at Salem Hospital. Our care there was very good. But ultimately we wanted the Neurologists to be up close and personal with Claire. Claire has had break through seizures with three and sometimes four medications in her. We need to find a treatment plan that reduces the risk of bad seizures when we finally take her home. OHSU will be more flexible and perhaps more "experimental" with her pharmaceutical treatments--more than Salem Hospital was willing to do.

The Doernbecker's Panda Transport team carried Claire by ambulance to Portland this morning at 10:30. The transport went well, though Claire did not appreciate being strapped into an adult gurney. We followed her up in our car about an hour later after we picked up some supplies from our house.

Claire is now being hooked up to what is her 8th EEG. This one will be for constant monitoring during our stay at Doerbecker's. Because we are no longer in a NICU, our presence is more valued. We are more responsible for her regular feedings and changings. We will have a button to push to indicate that Claire is having a clinical seizure, allowing the Doctors to review the EEG at the times it was pushed.

We are in a private hospital room. It is significantly quieter than the NICU in Salem. We have our own bathroom, TV/DVD, and a cot for sleeping. But it is not exactly comfortable. We have requested space in the Ronald McDonald House and may end up going there for some sleep opportunities. We may also consider an extended stay hotel, if there is no space available at Ronald McDonald. Fortunately, most of my scheduled work for next week is in Portland, so I can work from here.

We expect to to be here for at least one week. Many of you ask us all the time what you can do to help. Prayer, for the time being, is still the greatest need. Some of you have provided gift cards for dining, which has proven most helpful since we cannot store or cook food. Now that we are in a private room, guests are most welcome. You can find us on the 9th floor of Doernbecker's in room 42. Just pick up the black phone and let the nurse station know you are here to see us. This is a huge facility and the view of Portland is fabulous, with fine dining nearby--well worth the trip.

Thank you, for the umpteenth time, for your prayers, encouragement, and warm support.