December 3, 2017
Hello, friends and family. It's been two weeks since our last post. Our goal is to post every Sunday, so sorry about missing last week.
It's been a wild two weeks for the Taylor family. We traveled to Tri-Cities, WA to spend Thanksgiving with Mary's family. Josh came with us, of course, and really seemed to enjoy hanging out with his cousins. Josh 2.0 doesn't say much and has relatively flat emotions, but he clearly enjoyed this time. One night, a large group of cousins and aunts and uncles played a marathon game of Scum. Josh not only enjoyed participating, he actually did very well and held his own against everyone else. He seems to excel in strategy situations.
After a few days in Tri-Cities, we went back to Portland. Paul left the next day on a three-day trip to Boston for his work. When he got back, we left the next day to visit Michelle's family in Washington, DC, which is where we are as we type this update. Josh is with us on this trip too. He did just fine on the long airplane ride and even changing planes in Detroit.
Here's a photo of Josh with Matt in front of the Great Falls (some people call it Mediocre Falls).
We have had a couple of scary incidents with Josh over the past couple of weeks.
Sometimes when Josh gets out of the shower, he is pale and he has lost his sight! When we call into the bathroom, "Are you okay?" he always answers that he is, but he isn't. When he goes blind, he recovers within 20 minutes, but it is very alarming while it lasts. This has happened twice. We believe this has to do with a drop in blood pressure, but we don't know that for sure.
The other thing that happens is that Josh turns blue. It starts with his fingernails then progresses to his lips then face. It lasts for hours and hours. We believe this is an oxygenation problem and Mary thinks it starts when he gets cold. The first time this happened, Mary took Josh to the ER, but by the time they were called back, Josh was mostly recovered, so Josh was discharged.
The first of these two problems happened just yesterday here in Washington, DC. After a long, hot shower, he was pale and lost his eyesight. The whole time Mary was asking, "Are you okay?" and he was answering, "Yes." He needed our help to find his way from the bathroom to his bedroom. We keep hoping we are beyond all the medical issues, but they continue to haunt us.
Although our vacation trips are interrupting his schedule, Josh is still doing special rehab therapy on an out-patient basis at a facility in Beaverton, not far from where we live. He goes three times a week for three hours each time. As we noted in our last post, we don't know too much about what goes on there because they prefer Josh be there without us. He seems to enjoy this time. He also continues to LOVE playing educational games on his iPad or computer. As noted above, he seems to excel at anything that requires strategy. Words are much more difficult.
Our friends and neighbors have been very supportive over the past month or so volunteering to come to our house for an hour at a time to help Josh with anything Mary has planned for the day. Josh enjoys being able to interact with others in these visits and the visitors have done an excellent job working with Josh. A group of 16- and 17-year old girls from our church visited the other night and helped Josh cut snowflakes and make some yummy treats. He especially enjoyed that visit! These visits free up Mary to do other things, which is a real blessing given the load she is carrying.
Heidi continues to be a great friend for Josh and for us too. She is so positive and supportive. We enjoy having her around and the interaction she gives to Josh. We also enjoyed that she is excited about decorating for Christmas, since we aren't nearly as enthused about it. She and Josh decorated the Christmas tree last Thursday night.
As you can tell, we are still waiting for Josh's new glasses to come in. We are now being told that he'll get them at the end of this week. The waiting is killing us because we have to keep Josh's weak eye taped so that he doesn't have double vision, but the more it is taped, the weaker it gets!
We are off to church. Thank you to all of you who care.
Hello, friends and family. It's been two weeks since our last post. Our goal is to post every Sunday, so sorry about missing last week.
It's been a wild two weeks for the Taylor family. We traveled to Tri-Cities, WA to spend Thanksgiving with Mary's family. Josh came with us, of course, and really seemed to enjoy hanging out with his cousins. Josh 2.0 doesn't say much and has relatively flat emotions, but he clearly enjoyed this time. One night, a large group of cousins and aunts and uncles played a marathon game of Scum. Josh not only enjoyed participating, he actually did very well and held his own against everyone else. He seems to excel in strategy situations.
After a few days in Tri-Cities, we went back to Portland. Paul left the next day on a three-day trip to Boston for his work. When he got back, we left the next day to visit Michelle's family in Washington, DC, which is where we are as we type this update. Josh is with us on this trip too. He did just fine on the long airplane ride and even changing planes in Detroit.
Here's a photo of Josh with Matt in front of the Great Falls (some people call it Mediocre Falls).
We have had a couple of scary incidents with Josh over the past couple of weeks.
Sometimes when Josh gets out of the shower, he is pale and he has lost his sight! When we call into the bathroom, "Are you okay?" he always answers that he is, but he isn't. When he goes blind, he recovers within 20 minutes, but it is very alarming while it lasts. This has happened twice. We believe this has to do with a drop in blood pressure, but we don't know that for sure.
The other thing that happens is that Josh turns blue. It starts with his fingernails then progresses to his lips then face. It lasts for hours and hours. We believe this is an oxygenation problem and Mary thinks it starts when he gets cold. The first time this happened, Mary took Josh to the ER, but by the time they were called back, Josh was mostly recovered, so Josh was discharged.
The first of these two problems happened just yesterday here in Washington, DC. After a long, hot shower, he was pale and lost his eyesight. The whole time Mary was asking, "Are you okay?" and he was answering, "Yes." He needed our help to find his way from the bathroom to his bedroom. We keep hoping we are beyond all the medical issues, but they continue to haunt us.
Although our vacation trips are interrupting his schedule, Josh is still doing special rehab therapy on an out-patient basis at a facility in Beaverton, not far from where we live. He goes three times a week for three hours each time. As we noted in our last post, we don't know too much about what goes on there because they prefer Josh be there without us. He seems to enjoy this time. He also continues to LOVE playing educational games on his iPad or computer. As noted above, he seems to excel at anything that requires strategy. Words are much more difficult.
Our friends and neighbors have been very supportive over the past month or so volunteering to come to our house for an hour at a time to help Josh with anything Mary has planned for the day. Josh enjoys being able to interact with others in these visits and the visitors have done an excellent job working with Josh. A group of 16- and 17-year old girls from our church visited the other night and helped Josh cut snowflakes and make some yummy treats. He especially enjoyed that visit! These visits free up Mary to do other things, which is a real blessing given the load she is carrying.
Heidi continues to be a great friend for Josh and for us too. She is so positive and supportive. We enjoy having her around and the interaction she gives to Josh. We also enjoyed that she is excited about decorating for Christmas, since we aren't nearly as enthused about it. She and Josh decorated the Christmas tree last Thursday night.
As you can tell, we are still waiting for Josh's new glasses to come in. We are now being told that he'll get them at the end of this week. The waiting is killing us because we have to keep Josh's weak eye taped so that he doesn't have double vision, but the more it is taped, the weaker it gets!
We are off to church. Thank you to all of you who care.
We love Mediocre Falls!!
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