October 10, 2017 Dear friends and family. We have not forgotten about you. We are all back in Portland now -- Mary and Josh flew in last Friday and Paul drove in last Saturday. It has been so awesome to be home. Even Josh seems to be flourishing back at home. He seems to be much more of a normal person than a patient in a hospital. As I guess we have now illustrated, we don't intend to continue to post every day on this blog. First, we're running out of exciting things to say now that we're home. And second, the changes in Josh are more subtle now and probably not worth mentioning on a daily basis. We are still trying to decide what to do with Josh now that we are home. We are looking into both an in-patient community center on the east side of Portland as well as an out-patient rehab center that is much closer to our home in Beaverton. Both programs are run by the same rehab group. The decision really comes down to whether we think it is better for Josh to live with
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October 5, 2017 11:00 pm It was our last day at Craig Hospital!! We have loved Denver, but we are not that sad about leaving this facility. There have been good things and good people, but there have been a lot of struggles too. Josh finished his unit testing in ST today. It was unexciting. In OT, Heidi wanted to make sure Mary knew how to do the eye strengthening exercises at home, so she watched Mary do them. Mary did them perfectly. Then Heidi taught Mary and Josh how to play Mancala. And the very last therapy for today (and forever at Craig) was PT. Fortunately, we had Elana as our therapist instead of Barb. Elana is fun. She played golf, tennis, and skiing on Kinect with Josh for the first 40 minutes, and they played soccer in the hallway for the last 20 minutes. It's always great when education and fun coincide. Paul began his drive home at 11:45 this morning. Mary spent most of the rest of her day filling out paperwork, talking with doctors both in Denver and in Po
October 4, 2017 11:20 pm Given the universe's need to maintain equilibrium, it only makes sense that such a bad night would follow such a good day. Josh couldn't sleep last night. He said he was anxious; he said he was afraid. For whatever reason, he just could not sleep. Which means that Mary could not sleep either. FINALLY it was time to get up. We got him dressed and retrieved breakfast. He rolled up to the table, took 3 bites of french toast, and ... Mary couldn't get him to wake up. She rolled him to PT while he was still mostly asleep. PT was unremarkable, as usual. Josh did leg stretches for an hour then we returned to the room where he ate nasty hard and cold potatoes. He had neuropsychology at 10:30. Again, unremarkable. Then Josh had OT. He kept falling asleep, so it was a real struggle to get anything done. But here's the cool thing. Before leaving neuropsychology, Schraa asked Josh to draw 6 figures -- strange shapes; nothing recognizable. Halfw
October 3, 2017 10:45 pm Dr. Makley wasn't here, so Mary met with Makley's PA (Jeremy) regarding Josh's medical needs. She told Jeremy about a few things that she would like to happen today - all things she has discussed with Makley over the past few weeks. But Jeremy actually did them! ALL of them! First, Mary wanted a test done to determine whether Josh needs to have the Lovenox shots every morning. She suspected those could be discontinued. Jeremy ordered the ultrasound, which was done at 9:00am. No DVTs were found in Josh's extremities, so Josh had his last Lovenox shot this morning! (Not only is the shot unpleasant, but there is a painful burn that lasts for several minutes after the shot is given. No more!!) Mary also wanted Josh's G-tube removed. It could have been removed WEEKS ago! She told Jeremy she wanted the G-tube out. Jeremy submitted the order asking that it be done ASAP. A couple of hours later, Gail (the GI nurse practitioner) came while J
October 2, 2017 10:00 pm Josh's classes this week are all "DC" (discharge) classes. DC classes have two objectives: (1) to give Josh the same tests they ran the first week he arrived for comparison sake, and (2) to teach us what activities to do at home to further Josh's growth. In PT this morning, Barb measured Josh's flexibility. It took the whole hour. Josh had ST next. Allison did all the tests she ran the first week in about 20 minutes, so the rest of the hour was identifying objects found in a garage and trying to create sentences about those objects (e.g., I use a lawnmower to cut the grass). Josh couldn't compose a single sentence, and he fell asleep about 40 minutes into class. Mary took Josh on a walk around the building to awaken him before his next class: neuropsychology. Dr. Schraa began by giving Josh a piece of paper and asking him to copy the signs and symbols he saw. Josh complied. Then Josh was to draw the signs and symbols from
October 1, 2017 9:10 (big fat hen) pm Hardly a darn thing happened today worth sharing, so this is going to be short. After the usual breakfast ordeal, we started general conference on Mary's computer. Josh turned on the TV at the same time, so I guess that showed his preference! We asked him to turn the sound off on the TV until after conference, which he did, the compliant and cooperative young man that he is now. He fell asleep about midway through conference. After conference, we got some lunch and then took Josh out to purchase some new reading glasses. The ones he's been using the last few weeks belong to Craig, so we really needed to get some of his own. We found some he said worked the best (hard to know for sure) at Target and got back to his room in time for the second session of conference. We worked on puzzles with Josh during conference. Josh 1.0 was GREAT at putting puzzles together, but didn't really enjoy it much. Josh 2.0 can't accurately separate